Super-Swap

For people in need of a kidney who do not have a willing, matching donor, paired exchanges or "kidney swaps" are a great option.

Today's Chicago Tribune has a great article about four pairs of strangers who saved each others' lives via this progressive step in transplant pairing.

Pierre Kattar, Sr., one of the recipients, is a friend of mine here in Chicago. His son, Pierre Jr. (one of the donors in the swap) is a Kidney Chronicles reader and a great guy. I spoke to Pierre Jr. about a month before the surgery to put his mind at ease about the level of sacrifice involved in a kidney donation as well as his high likelihood of a quick recovery. Best wishes to the Kattar Boys and all eight swappers.

Here's the article:

www.chicagotribune.com/news/local/chi-kidney-transplant-dominoapr09,1,5480170.story


Area's first-ever four-way kidney transplants a success
Inter-family incompatibility led to 12-hour surgery marathon

By Deborah L. Shelton and Robert Mitchum

Tribune reporters

11:09 PM CDT, April 8, 2008

Pierre Kattar Jr. could not donate a kidney to his father because of incompatibility, so he gave one to Niral Patel, whose mother had wanted to give him a kidney but could not. Instead, Patel's mother gave her kidney to Alice Smith.

So it went last Thursday at Northwestern Memorial Hospital, where four kidney donors and four kidney recipients gathered for a rare set of operations known as a domino paired exchange, the largest ever performed in the region. Doctors announced the surgeries' success Tuesday.

Such arrangements are becoming more common as doctors seek creative ways to get kidneys to people who need them. Saturday, surgeons at Johns Hopkins Medical Center in Baltimore performed a six-way paired exchange, the largest ever done.

The operations at Northwestern and Hopkins come as some transplant officials push for a national program to increase paired kidney donor exchanges. Last year, the National Organ Transplant Act was amended to clear the way for the program.

In 2007, surgeons performed more than 16,000 kidney transplants, 6,000 of which used organs from living donors. Some experts say the linked surgeries could make as many as 2,000 additional kidneys available every year for transplant.

Hopkins transplant surgeon Dr. Robert Montgomery described the operations as "one of the most significant breakthroughs in transplantation in the last decade."

More than 30 percent of kidney patients know someone willing but unable to become their donors because they are not a suitable tissue match, said Dr. Matthew Cooper, associate professor of surgery at the University of Maryland Medical System and incoming chair of the United Network for Organ Sharing living donor committee.

Despite widespread support, some concerns—ranging from ethical issues to whether the network is pushing ahead too quickly—have been raised.

Dr. Steve Woodle, a Cincinnati transplant surgeon who is a member of the Paired Donation Network, said he questioned whether the United Network for Organ Sharing was the best agency to oversee a national exchange program and whether the necessary resources are available. The United Network for Organ Sharing has faced criticism for not doing enough to protect living donors.

Woodle and others also said some patients waiting for a deceased donor organ could even be at a disadvantage under a national program. Donors with blood type O are best suited for triggering a domino exchange because their organs can be donated to more patients. But using them as donors for people with other blood types means type-O patients on the waiting list, who can only receive organs from type-O donors, will have fewer options, Woodle said.

Others expressed ethical concerns about how the donors could be affected.

"The larger these pairs, the greater pressure on the donor," said Donna Luebke, a living kidney donor who helps coordinate an Ohio-based group that advocates for living donors. "If they back out, it doesn't collapse just one surgery, it can collapse four. The more people you bring in, the more people that donor feels responsible for."

Transplant officials recognize the need to offer a way out for people who don't want to become donors—even if they have to stretch the truth and say they are not medically suitable.

"We need to be able to medically disqualify people when they don't want to do it on psychological or emotional grounds," said Arthur Caplan, director of the Center on Bioethics at the University of Pennsylvania.

Kattar admitted he had had fears about the surgery, but said being part of a complicated operation gave him extra motivation to take the risk.

"It became more than just about my father, and that actually helped me to go through with it," Kattar said. "I thought, 'Now they're really counting on me. If one person backs out, you got 7 people that are . . . out of luck.' "

The surgeries last week brought together a donor who works at Northwestern's transplant center with three sets of kidney patients and the family members who volunteered to become their living donors but were medically incompatible. Also included was a patient who had been waiting for a kidney from the deceased donor list.

The transplants were performed over a 12-hour period Thursday, involving three operating rooms and 32 doctors, nurses and staff members, said Dr. Joseph Leventhal, one of the surgeons and the director of the hospital's living donor kidney transplant program.

The four-way exchange was triggered by the failure of a more typical direct donor-to-recipient transplant.

Doug Penrod, 61, of Chicago, who has worked in transplant medicine for 20 years, most recently at Northwestern, decided last year to donate a kidney to a friend's father. But the intended recipient became too ill for the surgery, prompting Penrod to consider other options.

"I've seen the good that comes with a transplant," Penrod said. "I told the program director, 'Hey, I'll give it to anybody, let's get this rolling, let's get this done.' "

Northwestern's living donor kidney transplant program then set out to determine how to best use Penrod's kidney. In the weeks before Thursday's surgery, they located three parent-child pairs and an eighth patient, drawn from the center's kidney waiting list.

Though each donor and their recipient were not given information about the other before the procedure, the eight patients met for the first time Friday as they recuperated at the hospital.

Penrod's kidney went to a Chicago woman whose daughter, Griselle Ortiz, 25, came from Puerto Rico to donate to Pierre Kattar Sr., 60, a Lebanese-born Chicago native. Kattar said despite the language barrier with Ortiz, he was able to thank her through a translator.

"I told her that she really helped me and my family," Kattar said. "It was across all racial lines and it was beautiful to see that all these people of different backgrounds can exchange organs."

Kattar's son flew from his home in Washington, D.C., to donate his kidney to Niral Patel, 25, of Westmont, who was receiving his fourth kidney transplant after suffering from polycystic kidney disease. Kattar Jr. and Patel said they hit it off after the surgery when they learned each owned an iPhone, and have been sending each other text messages in the days since.

"I thought I would never meet the recipient of my kidney, and I didn't care," Kattar said. "It was about saving my father.

"When I met Niral, it was like, 'Wow,' " Kattar Jr. said. "It set in that I did for Niral and his family what someone else did for my father and my family."

Completing the exchange, Niral Patel's mother, Vina, 54, donated her kidney to Smith, 65, of Joliet, who had been receiving dialysis treatment for five years.

"My heart was full of joy," Patel said of meeting Smith. "I was so glad my body part helped someone's life."

Penrod said he was moved to discover that patients he had worked with for years at the transplant center, including Kattar Sr. and Patel, were among the recipients in the exchange procedure.

"Hopefully this is going to enable them now to have a better life with their family, to be able to do more things," Penrod said.


Copyright © 2008, Chicago Tribune

Living Liver Donation & Links

I found this excellent article about what it takes to be a living liver donor:

http://www.mssm.edu/rmti/liverdonor.shtml#TSeven

Furthermore, I made contact with a remarkable woman named Becky Waller who donated a lobe of her liver to her brother. And she has a blog, cleverly called "Chopped Liver" where she recounts her experience:

http://chopped-liver-blog.blogspot.com/

An enterprising young man named Nelson Freytes started a social networking site for anyone involved in transplants (donors, recipients, professionals, etc.). It's called Transplant Cafe, and all the cool kids are there:

http://transplantcafe.ning.com/

The Onion celebrated National Kidney Month with the hilarious video:

Glamour Magazine

The February 2008 issue of Glamour magazine hits the stands across America on January 8. Among the perfume, skin care and herpes treatment ads is an article about my kidney donation to Brenda. It’s on Page 135 and the piece has a sizable photo of us taken the day before the transplant surgery. An excellent journalist named Sarah Robbins wrote the very dignified 200-word piece in a publication that, to put it kindly, doesn’t always reach very high to tackle serious issues in much depth (“Six Genius Love-Life Tips from Animal Trainers” anyone?). All kidding aside, Sarah Robbins wrote a solid article of which she should be proud, and my sources tell me that Glamour covers women’s health issues regularly with dignity and compassion.

As of the date I’m typing this, the article is not available online at www.Glamour.com. Presumably there’s not enough bandwith available to fit my article alongside the piece about the couple who rebooted their relationship via a New Years Resolution to have sex every day. So, you’ll have to go to your newsstand or grocery store to purchase it yourself (“Plain brown wrapper, please.”)

My favorite line in the whole thing sums up the reason I do any press at all:

“I assumed it was this massive sacrifice, and you spend the rest of your life sick,” says the Chicago father of two. Then he learned that for donors, the procedure is relatively simple, with a quick recovery time - and that you can live just as well with one kidney as two.

As long as that point is driven home, my appearance in Glamour will be worth the mountain of crap I’m going to get at work for this particular piece of press exposure. (Why are FBI agents reading Glamour in the first place???)

My dad, for one, always wanted me to be in Sports Illustrated. He’ll just have to settle for this.

Update:

The article is now available online as a .pdf file at:

http://www.matchingdonors.com/life/pdfdocs/Tom3.pdf

Wall Street Journal Article

Why It's Hard To Give Away A Kidney

Most Hospitals Avoid Donors Who Want to Help Strangers, Wary of Motives and Fearing That the Neediest Aren't Served

By LAURA MECKLER

December 26, 2007; Page D1

Each year, hundreds of people decide they want to donate a kidney, not because someone they know needs a transplant, but because they want to help and don't care who benefits. But the desire to give can be hard to fulfill because many hospitals won't accept altruistic donors, and there are few resources to help donors navigate their options.

The hospitals' reluctance grows from concerns that these potential donors may be psychologically unstable, likely to change their minds and, perhaps, secretly paid for their kidneys. Given the risks of the surgery, which are small but real, some argue that it makes little sense for a stranger to donate a kidney.

"If someone really wants to help society, they can go work in a soup kitchen, they can join the Peace Corps, they can do a lot of things that don't put their lives at risk or implicate a [transplant] center," says Timothy Pruett, a kidney-transplant surgeon who is president of the United Network for Organ Sharing, which oversees transplantation under a government contract. His hospital, the University of Virginia, has handled just three of these donors, all in recent years.

Advocates of altruistic donation look at the UNOS transplant list -- where nearly 75,000 people are waiting for a kidney -- and argue that the nation needs every willing kidney it can get. Amid pressure to do more transplants, a few hospitals are starting to loosen their policies. A handful of online and other services have also sprung up that help match would-be donors with strangers in need.

But for the most part, such donors find that few hospitals are willing to take them. Garet Hill, a consultant from West Islip, N.Y., decided to help recruit altruistic donors after his 11-year-old daughter received a kidney from her cousin. He has created a matching service called the National Kidney Registry to help potential donors find a hospital that will take their kidney. Up and running for only about two months, the registry has received about 200 inquiries, most of them from people who said they were interested in donating anonymously to anyone who needs it. Of those, about 10 people have sent back follow-up paperwork so that Mr. Hill's group can make inquiries with hospitals.

The group has found that while some hospitals "welcome us with open arms," many aren't interested. "We had one hang up last week," Mr. Hill says. "What we're finding is odds are most transplant centers will not welcome you as an altruistic donor."

Over the past decade, more than 450 people have become anonymous donors. (Other altruistic donors have sought a stranger out for purposes of donating a kidney, but those numbers aren't tracked.) Many more have begun the process, but have been ruled out on medical or psychological grounds, or changed their minds. It's a tiny sliver of total live organ donors -- out of 6,400 living kidney donors last year, just 68 were anonymous -- but they raise particularly complex questions for both donors and hospitals alike.

The first question for would-be donors is who should receive the organ. They have two options: approach a hospital and offer their kidney to any needy patient, or hunt a worthy recipient on their own -- typically online. Both make transplant surgeons uncomfortable.

Ducking the Waiting List

For one, the waiting-list system is set up to allocate organs fairly, basically targeting the neediest and best-matched patient first. But allowing people to find donors online gives an advantage to the savviest recipients -- those best able to craft a heart-stirring online plea, and in some cases, those able to pay a Web site's fee.

One Web site, MatchingDonors.com, charges needy patients $295 to post their appeals for 30 days or $595 for a lifetime posting. Would-be donors can peruse the profiles and pick who they like best. "Help for a pastor's wife!" headlines one recent posting. "Learning disabled woman needs miracle kidney," says another.

A survey published this year in the American Journal of Transplantation found that just 30% of transplant programs would consider a donor who was solicited through a Web site or other media outlet. "I can't stop people from making connections over the Internet," says Gabriel Danovitch, medical director of the kidney-transplant program at the University of California-Los Angeles. But he won't consider them at his hospital, fearing that online matching services "end up distorting the system."

Still, this approach appealed to Tom Simon, a 37-year-old Federal Bureau of Investigation agent in Chicago, who decided to donate a kidney after reading about living donations. He considered giving anonymously but had misgivings. "What if my kidney wound up inside a real jerk?" he says. He decided he wanted his kidney to go to someone young who lived a healthy lifestyle.

Mr. Simon went to MatchingDonors.com and read the post for Brenda Lagrimas, who worked as an advocate for domestic-violence victims in Chicago. "My wife and I discussed the morality of 'playing God' and deciding who lives and who dies," he later wrote on a blog chronicling the experience. "Finally, I decided to go with Brenda for the following reason: if I had let the hospital pick my recipient, I would've hoped that the recipient's personal story be just like Brenda's story."

Hospitals' Rejection

Mr. Simon and Ms. Lagrimas had no problem finding a hospital in Chicago for the transplant, which was done last April. Not so for Gabriela Lacabe, a 35-year-old preschool teacher who lives outside of Los Angeles. Ms. Lacabe, sick with kidney disease since she was 9, went online and found a 23-year-old nursing student from Alaska willing to give her a kidney. But her transplant center, UCLA, wouldn't consider the transplant. They tried St. Vincent Medical Center, but when St. Vincent learned that UCLA had rejected the donor, it did the same, according to David Lacabe, Gabriela's father. (St. Vincent couldn't be reached for comment.) Finally, the donor was approved by Cedars-Sinai Medical Center in Los Angeles, and the transplant was done in June.

One way around the ethical dilemma is to give anonymously to someone on the UNOS waiting list, an approach that appealed to Jim Falsey, now 62, a Catholic priest in Au Gres, Mich. He couldn't have imagined choosing the recipient himself. "How would you decide you're going to give to John and not to Mary?" he says.

He became interested in donating after his brother, Tom Falsey, donated one of his kidneys to a stranger. In fact, five members of Tom Falsey's extended family have donated kidneys: Two gave to Mr. Falsey's nephew (who needed a second transplant after the first replacement kidney failed), and three gave to strangers after learning about the nephew's struggle.

Jim Falsey says the decision was sealed for him during the Christmas season, when he read John the Baptist's admonishment that a man with two coats should give one to someone with none. The analogy to kidneys seemed obvious to him.

But donating to a stranger wasn't simple. Mr. Falsey's first-choice hospital, the University of Michigan, "hemmed and hawed" and appeared uncomfortable with the situation, he says. He did some initial testing, but they kept telling him to call back, and when he did, he says, they would put him off again. Frustrated, he tried another hospital where the donation was successfully done in 2004.

Krista Hopson, a spokeswoman for the University of Michigan, says the hospital has no policy automatically excluding anonymous donors, but she had no information on Mr. Falsey's case.

Of 166 hospitals that have performed kidney transplants, nearly one-third have never used an anonymous donor, and about half have done so three times or fewer, according to UNOS data. The survey in the American Journal of Transplantation found that about 40% of transplant centers will not accept stranger donations.

One of the concerns that transplant surgeons and others have about altruistic donors is that such people may be psychologically unstable and unrealistically hopeful that donating a kidney will change their lives for the better. There is near-universal agreement that these potential donors need particularly careful screening to make sure they are both physically and mentally healthy.

At UCLA, the program doesn't have enough staff to thoroughly screen potential anonymous donors, knowing that few will ultimately become donors, says Dr. Danovitch. Research at the University of Minnesota, the national leader in anonymous donors, found that of 360 inquiries between 1997 and 2003, just 42 went through the mandatory in-depth medical and psychological evaluation and only 22 transplants resulted.

There are no national rules governing who receives altruistically donated kidneys. Most hospitals that accept such donors say they simply give the kidney to the first person on the waiting list at their own center, without looking to see if there is someone who is a better match or has been waiting longer at a neighboring hospital. The United Network for Organ Sharing, which sets rules for the distribution of deceased-donor kidneys, has talked about setting rules for distribution of anonymously donated living-donor kidneys but has yet to do so.

'The Almighty Dollar'

At hospitals that are starting to allow altruistic donors, part of the incentive is financial, says Russell Wiesner of the Mayo Clinic Transplant Center in Rochester, Minn., which he says has lowered its standards and now takes a variety of donors who might have been nixed before, including altruistic donors. "The almighty dollar speaks loudly," says Dr. Wiesner, a professor of medicine. "Rewards and salaries are linked to how many [transplants] you do and how much money you make for the clinic."

There's also emotional pressure to approve donors. For years, Beth Israel Deaconess Medical Center in Boston wouldn't consider any altruistic donors, says Douglas Hanto, chief of transplantation. Then a longtime patient "ran out of other options" and decided to look for a donor online, and the hospital decided they didn't want to force him to go elsewhere.

The man wound up finding a cousin to donate, but the policy was changed, and Beth Israel will now consider altruistic donors. The hospital has yet to knowingly use an altruistic donor, Dr. Hanto says, though he found out after the fact that two patients had met their recipients online and lied about it.

Dr. Hanto still thinks there are good reasons to screen out these donors. But, he says, some of our patients felt "our position...was just a little bit too dogmatic, and a little too arbitrary."

Wall Street Journal

I received word that I will be in a kidney article in The Wall Street Journal written by the great Laura Meckler on Wednesday December 26, 2007. Check it out.

Re-introduction

A Re-introduction:

On April 19, 2007 I donated a kidney to a woman named Brenda Lagrimas whom I had never met before the embarking on my quest to donate a kidney to a stranger. The details surrounding the surgery and the story of what brought Brenda and I together are detailed in the early entries of this blog -- down at the bottom of the page (April and May 2007, mostly).

Because of my job as an FBI Special Agent and the odd way that Brenda and I met (via the website http://www.matchingdonors.com/), we ended up getting a lot of international publicity which led to an increased awareness of living organ donations which, in turn, led to others to step forward and donate to strangers.

If you have any questions, feel free to contact me at simonhere (at) mail (dot com). Here's a video to get you up to speed:




Health Update:

Nearly six months after the surgery, all is well with my health. Living with one kidney is no different at all from living with two. I'm not lopsided or fatigued or in pain. I don't pee more or less than I did before. I still work out a ton including some physical contact sports. Brenda's recovery was slower, which is totally normal. From the moment of the transplant, her new kidney worked perfectly and her kidney-related health problems disappeared. However, it took Brenda a while to find the "sweet spot" regarding the dosage of her anti-rejection drugs. Too much weakens her immune system. Too little increases her risk of rejecting my old kidney which would lead to her having to listen to me bitch and moan more than anyone should have to.

Anyway, Brenda has found the proper dosage of anti-rejection drugs, and she is now doing fine. We speak regularly, and our families have all met. She went from being a stranger to a organ recipient to a great friend over the course of this year, and for that, I am thankful.

My Interview with LifeSharers Executive Director

After expressing some ambivalence about the Internet’s latest organ sharing plan, LifeSharers, I received an email from Dave Undis, the organization’s Executive Director. He agreed to answer my questions for publication here on The Kidney Chronicles.

The concept behind LifeSharers is that members register with the organization (for free) and agree to give their organs to fellow members after they die. As you read the Q&A, keep in mind we are talking about cadaver organ donations, not living organ donations.

Here’s the back-and-forth we had via email:

1. How enforceable is the wish to donate to a fellow LifeSharers Member after death? I was always under the impression that living donors could choose their recipients, but cadaver donors went onto the general list.

LifeSharers use a process called directed donation to offer their organs first to other LifeSharers members. Directed donation, as practiced by LifeSharers, is legal under federal law and under the laws of all 50 states. Organs from deceased donors don't go to the general waiting list when directed donation is used. When you read a story about a deceased person's organ going to his aunt or a neighbor or a colleague's daughter, that's usually directed donation.

2. May I carry a card stating that I only want my organs to go to a Catholic? Or a white person?

There's nothing in the law that says you can restrict your donation to a member of a particular religion or ethnic group. You have to specify an individual as donee. LifeSharers members donate to individuals, not to a group. When a LifeSharers member dies in circumstances that would permit recovery of their organs, we rely on next-of-kin to contact LifeSharers to get names of other members who need transplants.

3. Will UNOS and the local transplant center respect a dead person's wishes about whom to bequeath an organ? Has this ever been tested or challenged?

No LifeSharers member has yet died in circumstances that would have permitted recovery of their organs. We are confident that transplant personnel will respect the legal wishes of our members to offer their organs first to named LifeSharers members. Transplant personnel are very unlikely to argue with a grieving family. Frustrating the wishes of a donor to give his organs to other organ donors also risks legal liability and a lot of bad publicity. I think one of the last things the transplant industry wants is a lot of publicity about how it wouldn't let an organ donor give his organs to other organ donors.

4. Who is behind Lifesharers? How is it funded?

I founded LifeSharers and I am the organization's Executive Director. LifeSharers has a distinguished group of advisors. You can see them at:
www.lifesharers.org/people.htm. LifeSharers is a 501(c)(3) non-profit rganization. Contributions to LifeSharers are tax-deductible. We are staffed by unpaid volunteers, so our operating costs are low. We rely on charitable contributions to fund our operations.

5. What does UNOS think?

UNOS says “Our formal position is that UNOS does not endorse LifeSharers' approach. However, UNOS does not intervene in directed donation if it is allowed by state law.” As mentioned above, directed donation as practiced by LifeSharers is legal under federal law and in all 50 states.

6. If you're trying to solve the fairness problem, couldn't it be solved by lobbying UNOS to put registered future cadaver donors to the top of the list rather than forming a club of internet-savvy folks? The whole fairness issue is only solved if nearly all registered donors join your club. I'm a little uneasy about yet another program that lets folks cut in line in front of the poor who may not be media or internet savvy.

LifeSharers is not trying to solve a fairness problem. We are trying to increase the number of registered organ donors by giving people an incentive to register. We offer a very good trade -- you agree to donate your organs after you die, and in return you'll increase your chances of getting a transplant should you ever need one to live. If UNOS adopted the LifeSharers approach, just about everybody in the United States would register as an organ donor. The supply of organs would go way up, and thousands of lives would be saved every year.

Although LifeSharers is not trying to solve a fairness problem, giving organs first to those who have agreed to donate their own organs does make the system fairer.

Your question about lobbying UNOS gets to tactics. Allow me to respond with a question. Is UNOS more likely to put registered organ donors first if I lobby them or if people across the country adopt the idea on a grass-roots basis? I think the question answers itself. LifeSharers currently has over 9,400 members. We doubled our membership last year and hope to do so again this year. The larger our organization gets, the more likely UNOS is to take action.

By the way, did you know that UNOS moves live organ donors up its waiting list if they later need a transplant? UNOS should do the same for people who agree to donate when they die.

You called LifeSharers "a club of internet-savvy folks". LifeSharers is not a club. It's a social contract -- I agree to offer my organs first to you, you agree to do the same for me, and we all agree to invite everyone else to join us. You don't have to be internet-savvy to join LifeSharers. Most people find out about us in newspapers, on TV, on the radio, or when they see our printed materials. Anyone can enroll in LifeSharers without using the internet by mailing back to us our printed enrollment forms. These forms are available for free by calling 1-888-ORGAN88.

7. It sound like a lot of headaches for my widow to enforce during the first few hours after my death. I would expect her to be pretty stressed and not worrying about whether my organ goes to a club member or just the neediest person on the UNOS list.

We do rely on next-of-kin to help ensure the organs of our members get offered first to other members. Interestingly, when a person joins LifeSharers, very often other members of their family join as well. So it may not be as much of a headache for a grieving widow as you suggest.

By the way, organs don't always go to the neediest person on the UNOS list. The neediest person is often passed over by UNOS allocation rules. Age, location, time spent waiting, and other factors not related to need play a part.

8. I would expect that most people signing up are already very sick and in need of a transplant, right?

That is NOT right. Only about 0.6% of LifeSharers members are on the national transplant waiting list.

9. Are you getting much push-back from transplant centers?

We are getting some push-back from OPOs. It is usually in one of two forms. First is the "you can't donate to a group" variety. As explained above, LifeSharers members don't donate to a group. We donate to individuals. Our process is carefully designed to comply with federal and state law. The second is "LifeSharers will slow down the allocation process". What we add to the process is one phone call. We welcome the opportunity to work with OPOs to streamline the process.

10. Where can readers learn more?

You mention after your questions that you'd like to understand the LifeSharers process better. Please review these pages on our web site:

http://www.lifesharers.org/howitworks.htm

http://www.lifesharers.org/faq.asp


11. Not enough people die in the right way (young with traumatic head injury leaving the body organs in tact and ripe for donation) to make up for the kidney deficit in America today. Your solution seems fair, but ultimately I can't help but wonder how re-jiggering the waiting list with "a club" ultimately helps the problem.

You also mention that not enough people die in the right way to make up for the kidney deficit. While this may be true, LifeSharers can put a big dent in it. Americans bury or cremate about 20,000 transplantable organs every year. About 10,000 of them are kidneys. Reducing this waste would save lots of lives and move lots of people off dialysis.

Tom Simon’s final thoughts:

I'm still trying to get my head around this. Before I decide whether this is something I support (and, candidly, who really cares what I think?), I'd like to understand the process better and see how it works in practice.

For my part, I'm happy to get the word out about the service and let individuals work out their own strategies.

However, I prefer to spend my time promoting living donors.

LifeSharers.org

I don't really know how I feel about this site...
- TS
----------------------------------------------------

http://www.lifesharers.org/

Welcome to LifeSharers

If you ever need an organ for a transplant operation, chances are you will die before you get one. You can improve your odds by joining LifeSharers. Membership is free.

LifeSharers is a non-profit national network of organ donors. LifeSharers members promise to donate upon their death, and they give fellow members first access to their organs. As a LifeSharers member, you will have access to organs that otherwise may not be available to you. As the LifeSharers network grows, more and more organs may become available to you -- if you are a member.

Even if you are already a registered organ donor, you should join the LifeSharers network. By doing so, you will have access to organs that otherwise may not be available to you.

By joining LifeSharers you will help reduce the deadly organ shortage. By offering your organs first to other organ donors you create an incentive for non-donors to become donors. As more people register as organ donors, fewer people will die waiting for transplants.

By joining LifeSharers you will also make the organ transplant system fairer by helping registered organ donors get their fair share of organs. About half of the organs transplanted in the United States go to people who have not agreed to donate their own organs when they die. That's not fair, and it's one of the reasons there is such a large organ shortage.

Join LifeSharers now. It's free. It could save your life. Everyone is welcome to join. There's no age limit, and no one is excluded due to any pre-existing medical condition. Once you've joined, you can sign up your children as well.

Learn more about why you should join LifeSharers.

American Spectator: Whassup With That???

Some chooch named Lawrence Henry wrote a psychotic attack piece on me in The American Spectator. I replied in an opposing piece. Both are copied below.

First, Mr. Henry:

http://www.spectator.org/dsp_article.asp?art_id=11790

An Update on Transplant
By Lawrence Henry
Published 7/27/2007 12:08:35 AM

In an op-ed published July 16 in the Chicago Tribune, "Using the Internet to Donate Organs," Tom Simon argued the case for donating a kidney to a stranger via the website Matchingdonors.com.

"When I made the choice to donate a kidney to a stranger, I began the process as a non-directed donor -- meaning I was prepared to let Northwestern Memorial Hospital choose my recipient for me. I immediately began to have misgivings about this approach.

"What if my kidney wound up inside a registered sex offender or a violent ex-convict....I was less interested in saving the sickest person I could find and more interested in saving the life of someone who could make a difference in the world once his or her health was restored to normal.

"...I found the posting of a Chicago woman named Brenda for whom I felt a great deal of empathy. She was young, aspired to have kids and worked as a domestic violence court victim advocate for the Cook County state's attorney's office."

TRANSLATION: I WANTED TO DONATE A KIDNEY TO A LIBERAL. Does this kind of sanctimony make you as nauseated as it makes me? I have been on the other side of this Internet tease. I did a one-week trial with Matchingdonors.com. I wrote to four people of my blood type who stated on the site that they were willing to donate to anyone. The site's internal messaging system confirmed that my messages had been read.

I heard from no one.

I don't know what Matchingdonors.com charges for the privilege of "playing God," as Mr. Simon so accurately puts it. But it costs about $700 for a "lifetime" membership for would-be recipients. I've been getting e-mail blandishments from the site ever since my trial membership. They have slick phone salespeople to try to persuade you to buy those "lifetime" memberships.

Here's the rub: If Mr. Simon and his like are "less interested in saving the sickest person I could find," that sickest person is left to die. Twenty percent of dialysis patients die every year. I've had one close call myself this year.


IN 1972, THE GOVERNMENT STRUCK A DEAL with private insurers. After three years of treatment, Medicare would take over insuring End Stage Renal Disease (ESRD) patients. That also qualifies most ESRD patients for Supplemental Security Income (SSI). Being in a weakened state, most of us take it.

As usual, the government had no idea what it was getting into. In its first full year of operation, the ESRD Medicare program was spending $229 million. By its tenth year, the program costs exceeded $2.5 billion. By 1997, that cost had ballooned to $15.64 billion. Most of this money goes toward maintaining dialysis patients. Transplant saves Medicare about 60 percent post-transplant, assuming a ten-year period, because, 36 months after getting a successful transplant, transplant recipients stop receiving Medicare payments. Transplant patients mostly return to normal lives (as I did for 20 years). Nearly two-thirds of dialysis patients, especially those with diabetes, find themselves unable to do any more than support their daily personal needs.


THIS IS A PUBLIC POLICY ISSUE, LIKE IT OR NOT. It makes sense for government to encourage transplant, as opposed to long-term dialysis, simply on the basis of cost outlay. But it also makes social sense, because transplant recipients lead transparently normal lives, working, paying taxes, raising families, contributing to the general welfare.

As always, faced with a system that doesn't work well, patients with the gumption have taken matters into their own hands -- and wallets. An old pal of mine, also going for his third kidney transplant, got in touch with me to urge me to solicit a kidney from my friends, church members, and associates. I did that, and ultimately found several willing donors. One survived the testing process, and was willing to donate to the swap program at my hospital. The database of potential paired transplant donations is being run now, and I should know within a couple of weeks whether or not I have a kidney.

The head doc of the transplant program here advised me to wait until the fall to see what the database turns up -- it changes regularly. If I don't have a kidney by that time, I will take a short trip to Tampa and register with a transplant center there. The waiting time for a cadaver transplant -- from accident victims, mostly -- is shorter in Florida than in the Northeast. I do not have to move to Tampa. I can simply be ready to hop a plane at a moment's notice. It's expensive, but lots cheaper than living the way I'm living now

PREFERABLY, TWO PROGRAMS OUGHT TO BE IMPLEMENTED. First, there ought to be a national program of reimbursal for "Good Samaritan" donors -- people willing to donate either to an individual or to a medical center's swap program. Put simply, you ought to be able to sell a kidney, or have yours heirs do so. Second, instead of asking people to designate themselves as organ donors through the driver's license programs of various states, it ought to flip over: People would be presumed donors unless they explicitly opt out.

This is called "presumed consent," and it exists in Portugal and Italy, where dialysis is minimal and transplant common. Unfortunately, an irreducible population of idiots in this country remains convinced that doctors wait, Frankenstein-like, scalpels at the ready, to turn an accident victim into a dugout canoe before he's really dead.

Ideally, both policies would work together. Presumed consent would tend to keep the otherwise-inflationary price for selling an organ down.

SO WHAT'S THE OBJECTION, IN THE MEANTIME, to Internet dating for organ donors? Several statistical realities.

Organ donations are matched up by blood type. As my doc told me, "The ABs cycle through very fast, because blood type is not an issue." An AB can receive a donation from anyone. Meantime, Bs, Os, and As wait, and are likely to be among the sickest cited by Tom Simon in his smarmy op-ed.

Internet matchups do little or nothing to even out regional inequities in waiting time. They do nothing much, at least intentionally, to alleviate the generalized, ill-distributed, suffering of the waiting population of transplant candidates. And they will tend to give kidneys, like Mr. Simon's, to those applicants who, naturally or by design, ring all the right Oprah-like bells to move Mr. Simon's and his cohort's questionable consciences.

Make no mistake, Good Samaritan donorship is in the wind these days. Transplant medical centers are filled with literature on the subject from the National Kidney Foundation, the very establishment of transplant.

It all helps. But it's still not enough.

Lawrence Henry writes every week from North Andover, Massachusetts.

---------------------------------------------------------

Here is my response:

In Defense of Matching Donors

By Tom Simon

As an FBI Special Agent with 12 years of service, mostly in the Counterterrorism field, imagine my surprise to log onto the American Spectator website and read Lawrence Henry’s weekly column calling me a smarmy, sanctimonious liberal of questionable conscience because of my decision to donate a kidney to a fellow law enforcement professional I met via the website Matchingdonors.com.

In his piece, Mr. Henry recounts his own negative experience with Matchingdonors.com that led him to the conclusion that donating a kidney via an internet-facilitated match is morally objectionable. I can’t help but wonder if his opinion would have been different had he achieved positive results after he spent his week begging strangers for a kidney on the web. Furthermore, I fail to see the moral distinction between Mr. Henry appealing publicly to strangers within his church congregation and my recipient, Brenda, making her appeal to a larger audience of strangers via the web.

The fact that Mr. Henry failed in his attempts to successfully procure a kidney via Matchingdonors.com should be no surprise as he only gave it a week’s worth of effort. Brenda’s profile remained on the site for two years before I stepped up to help. Part of that may have been due to her having one of those hard-to-match blood types Mr. Henry cited in his piece.

The other factor is that living “stranger” kidney donations are very rare. Less than 100 individuals in America will step forward this year to donate kidneys to complete strangers. During the three year history of Matchingdonors.com, the site has facilitated less than 50 kidney donations at a time where over 90,000 Americans await transplants. This tiny niche of the transplant field is hardly worth all this ethical hand-wringing when the number of lives being saved is relatively paltry.

I share Mr. Henry’s concerns with the expensive price tag associated with a lifetime membership to Matchingdonors.com. The site’s administrators (with whom I have no affiliation) informed me that they are a non-profit entity operating at a loss, yet they are committed to working with those in need by waiving fees or negotiating payment plans based upon the customer’s financial means. Personally, I think a better option would be for the United States to follow the lead of the Commonwealth of the Bahamas who recently inked a deal with Matchingdonors.com to put 100% of the country’s organ transplant waiting list on the site.

Mr. Henry is also right in his public policy analysis regarding the need to compensate living organ donors and switch to a “presumed consent” system for cadaver donors. Curing diabetes would also be a big help. However, his vitriol toward internet organ matching and those of us who’ve volunteered to help is misguided and more than a little bizarre.

The best argument in favor of Matchingdonors.com is Conservative to the core: it’s my kidney, and I’ll give it to whomever I damn well please. Would Mr. Henry police my charitable financial giving with the same zeal that he wishes living organ donations to be regulated?

Finally, I wish Mr. Henry best of luck with his forthcoming third kidney transplant. He indicated it will most likely be a paired or swap donation, another innovative solution to deadly kidney donor shortages. I only hope that the stranger whose kidney he receives is treated fairly and not subjected to name-calling in public forums.


Tom Simon is an FBI Special Agent in Chicago and a living kidney donor. His experiences as a living donor are recounted at www.kidneychronicles.blogspot.com. He can be reached at simonhere at mail dot com.

Voice of the People

The Chicago Tribune printed a truncated version of my letter to the editor (see below). You can read their short version at:

http://newsblogs.chicagotribune.com/news_opinion_letters/2007/07/using-the-inter.html

Also, Brenda found an interesting article at:

http://www.ericksontribune.com/Home/TopStories/tabid/63/newsid404/5317/The-hidden-costs-behind-the-Gift-of-Life/Default.aspx

Auditioning for a Kidney

The 7/9/2007 the Chicago Tribune printed an Op-Ed piece by Dr. Timothy Murphy, a professor at a local university where he beat up on Matching Donors. I submitted an Op-Ed piece in response to his article, but I have no idea if it will be published or not.

Here they both are, starting with Dr. Murphy's piece:

http://www.chicagotribune.com/news/opinion/chi-oped0709organsjul09,0,2650413.story?coll=chi-newsopinioncommentary-hed

Commentary

Auditioning for a kidney

Transplant policy should be revised so organs go to those most in need, not those with the best appeal for help


By Timothy F. Murphy, professor of philosophy in the biomedical sciences at the University of Illinois College of Medicine at Chicago

July 9, 2007

Dutch television delivered a reality TV show like no other. Producers followed a dying woman as she chose which of three competitors would get one of her kidneys for transplant. The advance details were vague, if only because it was all a hoax: Nobody was dying, and everyone involved was an actor. By way of defense, the producers said they wanted to draw attention to organ shortages.

Finding organs for donation still is an uphill struggle in most countries. In the United States, people do not donate organs and tissues after death in numbers equal to the need. Surprisingly, living organ donors are not always so scarce. For example, since 2000, the number of living people who have given up a kidney for a family member or friend has exceeded the number of people who have been willing to donate kidneys after death.

This inclination to donate to a real, live person--instead of an unknown person on a waiting list somewhere--helps sustain an Internet site that matches living donors with people waiting for organs and tissues. At matchingdonors. com, people waiting for organs and tissues say a bit about themselves and what a transplant would mean to them. In fact, complete strangers do step forward to donate to people whose stories they find compelling. After these donors are screened, surgeons move organs from one body to another, relationships are forged and lives are saved.

Any transplant patient who receives an organ because a living stranger comes forward via the Internet wins the equivalent of a transplantation lottery. But people using the Internet to solicit donors represent only a tiny fraction of the nearly 100,000 people waiting for organs and tissues in this country. This kind of Internet publicity creates an express lane for some patients, to the disadvantage of others. Most people waiting for transplants are invisible to the public as they quietly wait for donations from the dead.

United States transplant policy must move to acknowledge the role the Internet has come to play in direct organ donation. Good-hearted people are using the Internet to search out people who need organs, but this approach does an end run around policies crafted to balance need and availability. To resolve this problem, the government could move to put people in need of a transplant on the Web, at least those willing to go public that way with a picture, a story, and some words of solicitation.

This way, strangers could search the entire catalog of people needing organs, with no one excluded. Yet this approach would ultimately pit transplant patients against one another, with advantages falling to the sympathetic and manipulative. Dubious motives--racism, sexism, ageism--could distort donation decisions as well.

In the name of protecting access for all, another option might be to bar the practice of stranger donation unless the donor surrenders the right to direct where the organs go. Some medical centers already accept stranger donations and treat organs obtained this way as donations from the deceased.

For example, a kidney donated by a stranger goes to the appropriate person at the top of the regional waiting list. This way, nobody jumps the line, and the accidents of fate--one's disease, one's skin color, one's age--don't stand in the way of hope for the organ one needs to stay alive. This option seems reasonable to me, but there may be other options out there that protect access and equity when it comes to sharing all-too-scarce organs. Let's get a discussion under way.

The Dutch public was cool to a television program that treated organ transplantation as reality-show fodder.

In the United States, we should learn from that lesson and reject the idea that one's media appeal ought to decide who gets a lifesaving organ and who does not.

Copyright © 2007, Chicago Tribune
----------------------------------------------

Here is my response:

Internet Kidney Matches: A Donor's Perspective

by Tom Simon

On April 19, I donated a kidney to a woman I met via the website matchingdonors.com. As such, I would like to add my perspective to the thoughts and ideas presented by Dr. Timothy Murphy in his July 9 commentary "Auditioning for a Kidney."

In his piece, Dr. Murphy makes the point that sites such as Matching Donors that allow potential organ recipients to present their cases to the public in hopes of finding a living donor are inherently unfair because they tend to reward the people with the best self-marketing skills rather than with the greatest medical need. He also makes the point that irrational biases such as race, gender, and age may unfairly factor into the donor's decision as to who will be rewarded with the life-saving gift of a vital organ.

When I made the choice to donate a kidney to a stranger, I began the process as a non-directed donor -- meaning I was prepared to let Northwestern Memorial Hospital choose my recipient for me. I immediately began to have misgivings about this approach. What if my kidney wound up inside a registered sex offender or a violent ex-convict? My personal biases were less demographically focused and more lifestyle-based. I was less interested in saving the sickest person I could find, and more interested in saving the life of someone who could make a difference in the world once their health was restored to normal.

I spent some time searching the Matching Donors site until I found the posting of a Chicago woman named Brenda for whom I felt a great deal of empathy. She was young, aspired to have kids, and worked as a domestic violence court victim advocate for the Cook County States Attorneys office. She was also experiencing severe kidney failure combined with complications arising from dialysis. My wife and I discussed the morality of "playing God" and deciding who lives and dies. Finally, I decided to donate my kidney to Brenda for the following reason: if I had let the hospital pick my recipient, I would've hoped that my recipient's personal story be just like Brenda's story. Given that reality, the final decision was easy.

The internet empowers the donor to make his own choice as to whom benefits from the gift of an organ donation. I also feel that as more people take advantage of the internet as a means to match donors and recipients, you will see less donors "chickening out" at the last minute. Being able to put a face and name with your intended recipient creates empathy and accountability – two major deterrents to backing out of this life-saving act moments before surgery.

I see nothing wrong with letting my emotions, preferences, and biases shape my decision regarding who gets my kidney. No one is troubled if I choose to give my other assets (i.e. cash) to people and causes I support. Why do people such as Dr. Murphy short-circuit when I decide to give my kidney to a person I support? Would he police my charitable financial giving with the same zeal that he wishes living organ donations to be regulated?

Dr. Murphy wisely suggested launching a website where all 100,000 needy potential organ recipients in America could put their stories on the web for the public to peruse. I suspect that matchingdonors.com would welcome the opportunity to serve this purpose. The good people at that website (with whom I have no affiliation) recently inked a deal to put 100% of the transplant waiting list of the Commonwealth of the Bahamas on their site. Dr. Murphy lost me, however, when he suggested the alternative of banning the practice of organ donations from strangers that permit the donor to pick a recipient.

The number of individuals currently waiting for a kidney transplant in the United States is nearly 100,000. This year, only about 100 of these individuals will receive kidneys from living strangers -- about half from anonymous living donors and half from people like me who sought out their donors on the internet. The Matching Donors website is responsible for a total of only 47 organ transplants -- hardly a cause for much ethical hand-wringing when lives are being saved by "biased" donors such as me.

I would respectfully recommend that thinkers like Dr. Murphy put some energy into increasing the number of living donors in America rather than scolding and disempowering those of us who stepped up to help.

Radio Netherlands Interview with Tom & Brenda

Radio Netherlands super-smart show, "The State We're In" posted their "Episode 2" for free download in MP3 format. It is a 1 hour show that features an interview with Tom Simon (aka me) and Brenda Lagrimas regarding our Matchingdonors.com kidney match made in heaven.

Our segment begins at the 12:40 mark of the program, and lasts a little over 7 minutes. Later in the show, an evolutionary biologist tries to explain why I did what I did as if I were a chimpanzee throwing poo at the wall of my cage. Wierd.

Here is the link:

http://www.radionetherlands.nl/thestatewerein/tswiradioprogramme/tswi-prog2

I was able to download it into my computer (and my iPod) by following the following steps:

1. Go to the link above
2. Right click on the "Listen to the Show (MP3)" link
3. Choose the "Save Target As..."
4. Download the MP3 file into your computer
5. After the file downloads, open it in your favorite media player program (iTunes, Windows Media, etc.)

Alternatively, here's the direct link to the MP3 file. I couldn't make it work, but maybe you'll have better luck:

http://download.omroep.nl/rnw/smac/en_the_state_were_in.mp3

I'm very pleased with the way Radio Netherlands edited the program. Let me know what you think!

The Kidney Chronicles in The New York Times

The following article appeared in Sunday 6/3/2007 New York Times. They used a quote from this blog at the end to lighten the piece up, I suppose:

http://www.nytimes.com/2007/06/03/weekinreview/03lewin.html?_r=2&pagewanted=print

Text:

A Television Audition for a Part in and of Life
By TAMAR LEWIN

THERE was outrage aplenty last week when a Dutch television network said it would broadcast a reality show featuring three patients competing for a kidney from a terminally ill woman. Viewers were to send text messages to help the woman, identified only as Lisa, make her choice.

Government and health officials in the Netherlands tried to find a way to stop the show, or at least the subsequent transplant. Disgusting, people around the world said. A tasteless stunt.

Toward the end of the broadcast Friday night, it was revealed that the show was indeed a stunt. While the contestants really did need kidneys, “Lisa” was not terminally ill, she was an actress with no plans to donate one, and the contestants knew it. But by then the show had accomplished its mission: to raise consciousness about the desperate shortage of organ donors.

The whole episode pointed up a certain fuzziness about the donor debate. What, exactly, was so off-putting about the show? Was it that the premise was unethical, or just tasteless? That a terminally ill woman would choose a stranger to receive her kidney, or that she would make her choice on TV? That somehow one person — the more attractive? the more charming? — would be deemed more deserving to live?

Organ donation has long been something of a slippery slope. Until the 1980s, when the United Network for Organ Sharing, or UNOS, was established in the United States, organs from cadavers were often allocated less by objective measures of medical urgency than through personal connections and quirky judgments about which recipients were most worthy.

Now, most cadaver organs go to those on the UNOS waiting lists, with matches made on the basis of medical factors like the size of the organ and blood type, the urgency of the patient’s need, the length of time spent on the list and the distance between donor and recipient.

But since the supply of organs is much smaller than the demand, thousands of patients die each year, waiting.

Since 2001, however, organ transplants from live donors, who usually pick their recipients, have outpaced those from cadavers; organs from live donors tend to do better, too. Increasingly, desperate patients are seeking live donors — through the Internet, creative advertising, or, even on television, a development that has made some bioethicists squeamish.

“I find this kind of show tawdry, turning a serious medical decision into a sideshow, based entirely on entertainment value,” said Paul Root Wolpe, a bioethicist at the University of Pennsylvania and president of the American Society of Bioethics and Humanities, who was interviewed before the hoax was revealed.

At the same time, some transplant experts noted that “The Big Donor Show” (“De Grote Donorshow,” with the O in “show” shaped like a kidney) was in some ways similar to competitions — not hoaxes — that take place quietly, off camera.

“It’s not all that different from what’s happening on the Internet, on sites like MatchingDonors.com, where people looking for organs post their pictures and their stories, hoping a potential donor will choose them,” said Jeffrey Kahn, director of the University of Minnesota’s Center for Bioethics. “Or there was a guy in Houston who bought a billboard saying he needed a liver, and a family called after their daughter was in a car accident and said they wanted to donate to him.”

On MatchingDonors.com, which warns potential donors that it is illegal to receive payment for their organs, patients looking for a live organ donor pay $295 a month, or $595 for the lifetime of the site, to register.

In one posting last week, labeled “Grace Needs a Healthy Active Dad,” the patient describes himself as a 41-year-old self-employed geologist, “caring husband and father of a beloved 11-year-old girl,” who loves “Labrador retrievers, camping and hunting, water-skiing and Nascar racing” and does not smoke or drink.

Online or on camera, such approaches to organ donation raise concerns.

“I think we’d reject as a matter of morality and equity that the prettiest people, the people with the best story, or the ones who can pay the most, should get access to this very scarce resource,” Mr. Kahn said.

In a handful of developing nations, kidney selling is not so uncommon, and there are those in the United States who argue that such transactions should be legalized, as mutually useful exchanges between rich and poor.

Most living donors donate when a loved one is in need. “It’s traditionally viewed as acceptable for a living organ donor to designate a relative or friend as the recipient,” said Dr. Mark Siegler, director of the MacLean Center for Clinical Medical Ethics at the University of Chicago. “That’s been true since the first successful transplant in 1954. Then 15 years ago, we broadened the category to include not just those related by blood, but those with an emotional relationship. Some programs now let people donate an organ to a particular stranger.”

And some transplant programs help arrange family swaps, in which a member of one family donates an organ to a medically matched member of another family, and vice versa.

The vast majority of cadaver organs, however, are given anonymously to those on official waiting lists: in the United States, there are almost 100,000 people waiting for organs, the vast majority for kidneys. But even in America, that doesn’t mean that families never direct who should get an organ from a dead relative.

“You’re not supposed to be able to, but it happens all the time,” said Mr. Wolpe, adding that while he had no problem with a family directing a cadaver donation to a sick relative, there was a very real danger that extending directed donation to strangers could distort the system. “We don’t want a system where families can say, ‘I want to donate to a white person, or a Jewish person.’ ”

Or, for that matter, a telegenic person: adding considerations of entertainment value to an already murky area ratcheted up the concerns.

Those behind “The Big Donor Show” said from the start that their goal was to highlight the Netherlands’ acute shortage of donors and prod the government to encourage more donations. BNN, the company that broadcast the show, scheduled it for the fifth anniversary of the death of Bart de Graeff, a former BNN director. Mr. de Graeff died of kidney failure at 35, after spending years on a waiting list.

“We know that this program is super-controversial and some people will think it’s tasteless,” said Laurens Drillich, the chairman of BNN. “But we think the reality is even more shocking and tasteless.”

The shortage of donors is less acute in the European countries that have “presumed consent” to transplant organs from a cadaver, unless the deceased specifically forbade it. In the United States, though, as in the Netherlands, donors or their families must consent to organs being harvested for transplant.

Endemol, the company behind “The Big Donor Show,” has produced reality TV hits like “Big Brother,” in which contestants are recorded living together in a house, and “Fear Factor,” which features bug-eating contests and rat-filled pits.

Some people who have been live donors or have received organs from live donors said last week that a touch of that sensationalism might not be a bad thing, if it put a human face on the need for organs and on those willing to make a relatively low-risk kidney donation.

Tom Simon, a Chicago F.B.I. agent whose blog, The Kidney Chronicles, tracks his recent kidney donation to Brenda Lagrimas, a woman he found on MatchingDonors.com, wrote: “The game show thing has a certain perverse appeal to me. How many centipedes do you think I could have gotten Brenda to eat on television for her to win my kidney?”

Punked by The Big Donor Show

Boy, do I feel silly for working myself into a lather, but I must say that I like "The Big Donor Show" much more as a "War of the Worlds" style hoax than I did as a high-school popularity contest.

Kudos to the Dutch for getting Planet Earth talking about this very serious issue.

My favorite aspect is that the Netherlands Parliament was actually engaged in serious debate about whether to censor the show. Perhaps we can get the U.S. House of Representatives debating the fate of characters on "Grey's Anatomy."

The State We're In & Freakonomics

Brenda and I recorded a great show yesterday for Radio Netherlands. It will air in the EU next week. I'll link when it posts as a podcast. The show is called "The State We're In," and it seems like a Dutch Version of "This American Life." I was amazed that the super-cool host, Jonathan Groubert (aka Ira Glass in wooden shoes), was able to perfectly mimic an American accent.

He then told me he was from Brooklyn.

I then told him the Yankees suck.

The link for the show is:

http://www.radionetherlands.nl/thestatewerein/

My episode on "Altruism" airs next week.

Also, the guys behind the bestselling book, Freakonomics, have a great blog at Freakonomics.com that has been trying to solve the kidney shortage through rational thought and open debate. My kidney donation to Brenda (and this blog) was mentioned in their regular "Freakest Links" feature. Here's the link:

http://www.freakonomics.com/blog/2007/05/31/the-freakest-links-gas-hikes-and-bridal-blogs-edition/

The Big Donor Show

By now you’ve heard the controversy surrounding Netherlands’ new reality TV program, The Big Donor Show. Here’s the deal:

"Dutch kidney donor TV program draws ire"

AMSTERDAM, Netherlands, May 29 (UPI) -- A Dutch reality television program in which a terminally ill [brain tumor] woman chooses someone to receive her kidneys will air despite criticism, station officials said.

Members of the Dutch parliament are urging the nation's health and media ministers to prevent the Friday broadcast of "The Great Donor Show" on public television, Hollywood Reporter reported Tuesday on its Web site. In the program, a 37-year-old woman will choose from three contestants who have a kidney disease.

BONN, which is scheduled to air the program, said it is broadcasting it to spotlight the lack of organ donors in the Netherlands.

"The participants in our show have a 33 percent chance of getting a kidney," Chairman Lauren Cyrillic said. "These odds are much better than in real life. In Holland the waiting lists for kidneys are growing every year."
-------------------------------------------------------------------------------------

America’s greatest minds in kidney public policy analysis, Virginia Postrel (former donor) and Sally Satel (her recipient) weighed in:

Sally Says:

“It's crazy alright. And, yes, sick and shocking. But despite my discomfort, I'm for it. Sensationalism is a powerful way to call attention to the desperate shortage of kidneys and to the tens of thousands of needless deaths each year that occur all over the world because not enough altruistic donors step forward.

"Indeed, the very idea behind the De Grote Donorshow (The Big Donor Show) is to shine a spotlight on the plight of patients who need a kidney. The show is intended as a tribute to the founder of the network -- Bart de Graaff --who died in 2002 at age 35 because he could not survive the years-long wait for a new kidney.”

Virginia says:

“It's about time somebody with some clout got angry about this egregious situation. Kidney patients need ACT-UP. Instead, they've got the way-too-complacent National Kidney Foundation, an organization more for doctors than patients.”

MY TAKE:

I don't understand why it is part of the story-line that the donor is dying of a brain tumor. It creates the incorrect impression that living with one kidney is a risky or dangerous proposition, and only someone who is going to die anyway should even consider it.

Statistically, living donors like Virginia and me with only one remaining kidney are no more likely to experience kidney failure than people with both kidneys in tact. When kidney failure strikes, it nearly always hits both kidneys at the same time.

As an aside, I'm not sure you really want a kidney from someone who is dying of cancer. Cancer cells tend to spread, and I don't know what kind of assurance the recipient is getting that, on the day of surgery, the kidney is cancer free.

Another troubling aspect is the utter lack of respect this program is showing for the dignity of the three contestants. I've had the pleasure of knowing several Dutch people -- best people on the planet -- and I can't imagine any of them enjoying watching three very sick people beg for their lives on television.
Furthermore, imagine being one of the two contestants who isn't chosen as the winner. How do you think its going to feel for them to be told that their lives aren't worth saving on national television?

Choosing to give my kidney to Brenda actually wasn't a difficult decision for me, but I have to say that I felt very uneasy looking at the online profiles of needy people whom I didn't choose. The only saving grace was knowing that these people would have no idea that I saw and considered their profiles and did not select them because I preferred Brenda. That level of compassion for the "unchosen" victims of kidney disease is missing here.

Should the show be permitted to air? Yes. I believe that the donor has the right to give her kidney to whomever she chooses using whatever criteria she chooses. That said, I think this woman is an absolute ghoul for electing to pick her recipient in this manner.

I will be appearing on the Radio Netherlands Worldwide program “The State We’re In” with my recipient, Brenda, to discuss this issue along with a general discussion of organ donation altruism. We’re taping on Thursday. When it posts on the web, I’ll let you know. Readers in the European Union should check their local listings.

Finally, the game show thing has a certain perverse appeal to me. How many centipedes do you think I could have gotten Brenda to eat on television for her to win my kidney?

My Australian Kidney Interview

I was recently contacted via email by Esther Han, a Sydney, Australia-based journalist for a publication called "Precinct" who is writing a story about internet kidney donations. She will be using my kidney donation story as part of her article.

Here are some of the questions she posed to me and my answers. I have no idea how much of it she'll use in her piece.

1. What would you like to say to the general public about living organ donors who donate over websites (I believe some people find the Internet a 'dangerous' place)?

Before the advent of websites such as MatchingDonors.com, people interested in donating an organ only had two choices:

1. Find someone in need yourself
2. Let the hospital choose someone for you

The internet empowers the donor to make his/her own choice as to whom benefits from the gift of an organ donation. I also feel that as more people take advantage of the internet as a means to match donors and recipients, you will see less donors “chickening out” at the last minute. Being able to put a face and name with your intended recipient creates empathy and accountability – two major deterrents to backing out of this life-saving act moments before surgery.

2. What sort of person does it take to do what you have done, donate an organ to a complete stranger?

Throughout this process, I’ve made contact with several other living donors who have chosen to donate kidneys to people with whom they had no prior relationship. None of them, including myself, seemed to be remarkable or heroic characters ripped from the pages of “Lives of the Saints.”

Instead, I think all living donors are persons who base their lives on facts and reason coupled with a keen sense of cost-benefit relationships. In short, we are all members of the reality-based community.

The greater public is saddled with the incorrect impression that donating a kidney is a very risky procedure with long-term health risks to the donor. However, ten minutes of research on the internet or a discussion with a any medical professional in the field of transplant will tell you this is not true. The reality is that the donor surgery is performed laparoscopically with small incisions for a quick recovery and minimal pain. And statistically, living donors with one remaining kidney are no more likely to have kidney problems than persons with both kidneys in tact.

Living donors of all stripes have taken the time to learn the facts about the procedure and its aftermath. As such, living donors are willing to accept this minor risk of surgery (“the cost”) with the tremendous upside of saving another’s life (“the benefit”). Those of us who chose to donate to a stranger are no more benevolent than those who choose to donate to a loved one. We just didn’t know anyone who needed a kidney when we made the decision to donate.

3. How much do you encourage it?

I would highly encourage everyone to learn the facts about living kidney donations. The risks are low, and the benefits are great. There is a website called www.livingdonorsonline.com that contains the testimonials of folks like me who have gone through the procedure as well as detailed information about what the donation process entails.

4. What would you like to say to those who feel that their only hope is through websites like matchingdonors, but have been waiting for over a year?

You want to be truthful about your medical situation, but also provide enough personal information about yourself, so readers can empathise and identify with you. It may seem shallow, but posting a nice photo of yourself is a must – people find it easier to relate to people they can see.

For me, I was less concerned about the direness of my recipient’s medical condition than I was about what I felt she could contribute to the world if she were in good health. If you have dependents or a “reason to live,” this should be emphasised more than the painstaking detail of your medical condition. I take it for granted that you are not seeking a kidney transplant for recreational purposes. Now, tell me about yourself.

5. There have been some ethical concerns raised about sites like matchingdonors including, emotional pull, potential recipients who might exaggerate or misrepresent themselves in their profile or contributing to an increasingly unfair system, what is your response to this?

I see nothing wrong with letting my emotions, preferences, and biases shape my decision regarding who gets my kidney. No one is troubled if I choose to give my other assets (i.e. cash) to people and causes I support. Why do people short-circuit when I decide to give my kidney to a person I support?

The idea that there’s this grave danger that internet fiends will con donors into giving up their kidneys to unsuitable recipients is pure nonsense. First of all, the recipients post because they need a kidney. No one is going to accept a kidney transplant unless they have a dire medical condition. Furthermore, the doctors will not perform the procedure on anyone unless there is a medical need.

I suppose it is possible that a potential recipient might lie about their dependents, their religion, or the emotional aspects of their lives to lure in sympathetic donors. To that I say: let the donor beware. Unlike non-directed donors who have no opportunity to do any due diligence regarding their recipients, internet donors are holding all the cards. The donor can request a sit-down with the recipient and his/her family, ask to see medical records, and do everything short of accepting cash (in America) before they agree to move forward with the procedure.

We need to dispel the myth that the hospital committees who choose which recipient on the list is “next up” are using a cold and calculating formula to make this decision. My sources tell me that it’s more like jurors deliberating a courtroom case and allowing their own feelings and biases – coupled with the facts – to decide who gets the next kidney. If you are comfortable letting this committee impose their values in making the decision about who gets your kidney, I have no problem with that. But I fail to see any moral dilemma behind imposing my own values in deciding whose life I want to save.

Finally, if anyone is placing themselves at risk of exploitation in using the internet as a conduit for organ transplant, it is the recipient. After posting her appeal on matchingdonors.com, my recipient, Brenda, was barraged with emails from con-men, immigration opportunists, and charlatans seeking to steal money or benefits from her in exchange for the promise of a kidney. She had to sift through all of this “kidney spam” before she could even find my email offering to discuss the matter further.

The Straight Dope about the "Sign Your Drivers Licence" Approach to Organ Donation

I just received an email from Scott Meis, Campaign Manager of Donate Life Illinois, a State-sponsored campaign to register Illinois residents in the state’s new organ/tissue donor registry.

Throughout this kidney donation experience, I’ve encouraged people to explore the possibility of volunteering to become living organ donors. I’ve also added that if people are uncomfortable with that, they should, at the very least, sign the back of their drivers’ licenses.

Unsurprisingly, I was wrong.

Scott explains:

“Our campaign is supported by Secretary of State Jesse White and donation agencies throughout the state. So few Illinois residents are unaware of the fact that signing the back of your driver’s license is actually NO LONGER adequate for making you an organ donor. There was a new first-person consent registry that went into effect on Jan. 1, 2006 that eliminates the need for additional consent and will ultimately help save hundreds of more lives each year (previously, families were overturning the decision of an individual to be a donor about 20% of the time due to the emotional grief of the moment, etc.). The important factor is that folks need to RE-REGISTER post Jan. 1, 2006 to join the new registry.

“There were about 6 million people signed up in the state’s old additional consent registry, and just over 2 million have signed up in the new registry. As you can see, there is a lot of work to be done to get the word out about the need to re-register.

“You can check out our official campaign website at www.IAmAreYou.org where Illinois residents can take a quick 30 seconds to re-register. This is the exact same registry as www.LifeGoesOn.com. All the same effort, just our additional way of getting the word out.”

Thanks for setting me straight, Scott.

In the interest of equal time, allow me to point out that “cadaver donations” alone are not going to solve the tremendous shortfall in organs needed in America.

As usual, I turn to Virginia “Kidney Kween” Postrel (www.dynamist.com) for a reality check:

“Sign you