Spreading falsehoods and confusing the issues

Today the Wausau Daily Herald published a letter from Dr. Anthony D'Alessandro of the University of Wisconsin Organ Procurement Organization. His letter was in response a letter from me that they published last week.

Dr. D'Alessandro wrote that LifeSharers "spreads falsehoods and confuses the real issues." He provided no examples, and I've written to him (through his employer and through the Wausau Daily Herald) asking him to do so.

Dr. D'Alessandro wrote that LifeSharers is "an exclusive club." There's a falsehood for you. LifeSharers is exactly the opposite of exclusive, since we make membership open to everyone at no cost.

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Organ allocation is not based on need

A common criticism of LifeSharers is that we might prevent an organ from going to the person who needs it the most. But organs are not given to the people who need them the most. We've written about this before here and here. More evidence of this is provided in an ABC News story about Jonathan Simchen, who was turned down by two transplant centers because he uses medical marijuana.

Virginia Mason Hospital in Seattle is one of the transplant centers that turned down Mr. Simchen:

Alisha Mark, a spokeswoman for Virginia Mason, would not discuss details of Simchen's case because of medical privacy regulations, but said that "any patient who smokes any product -- tobacco, cloves, medical marijuana -- would be precluded from receiving a transplant here."

At Virginia Mason, even tobacco use disqualifies you from getting a transplant, no matter how bad you need one.

Why does this kind of thing happen? Here's one possible explanation from ABC's story:

Transplant centers tend to be very careful because they survive financially based on the number of successful transplants they do, explains Maxwell J. Mehlman, director of the Law-Medicine Center at Case Western Reserve University. "They use a screening process to avoid people who might be failures and they look at several factors from drug use to having a support system," he said. "It has actually been a source of bioethical controversy because it allows them to reject homeless people and people who live alone. In some cases, it's a backdoor way of rationing based on social worth and lifestyles."

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In defense of LifeSharers

In a column in the Jackson Sun urging everyone to sign up to become an organ donor, Peter Watson discusses LifeSharers.

Mr. Watson disagrees with the LifeSharers approach. He writes that LifeSharers “totally discounts a person's reason for not donating. Maybe their religion forbids it. Maybe they are medically unable to donate.” Every major religion supports and encourages organ donation. No one is medically unable to offer to donate, because no one can say if your organs will be transplantable when you die. Surgeons keep changing the definition of what is transplantable as the transplant waiting list continues to grow. They are now transplanting lots of organs they would have rejected just a few years ago. The bottom line is that you can either offer to donate your organs to save your neighbors’ lives, or you can refuse. There are no good reasons for not donating.

Mr. Watson asks: “should people be denied life-saving treatment just because they have decided not to become a donor?” Of course not, and LifeSharers does not advocate denying medical treatment to anyone. But there aren’t enough organs for everyone, so giving an organ to one person means someone else won’t get it. It makes perfect sense to give organs first to organ donors, as a way to encourage more people to donate.

Mr. Watson writes: “Organs should be allocated based on who needs them most, not on whether that person is a donor.” This is a nice theory, but that’s not how it works in the real world. Organs are allocated based on several factors that often override need. Organ donor status should be included in organ allocation because doing so increases the number of organs that can be allocated.

Nothing could be fairer than giving organs first to registered organ donors. If you’re not willing to donate, why should you be at the front of the waiting list if you ever need a transplant? Giving an organ to someone who refuses to be an organ donor is like giving the Powerball jackpot to someone who didn’t buy a ticket.

Mr. Watson writes: “Deciding whether to donate one's organs is an extremely personal decision.” So is the decision about who will get your organs if you donate them. If you defend someone’s decision to not donate, you must also defend someone else’s decision to donate to other organ donors.

Every year over 8,000 Americans die waiting for organ transplants. These deaths are not the result of an organ shortage. They are the result of an organ donor shortage. Only about 50% of adult Americans have agreed to donate their organs when they die. Every year 20,000 organs that could have saved their lives are buried or cremated instead.

That’s why LifeSharers advocates giving organs first to registered organ donors. Giving organs first to organ donors will convince more people to donate, and that will save more lives. It will also make the organ transplant system fairer.

The national transplant waiting list will soon reach 100,000 people. Most of those people will die waiting. If you are a registered organ donor you are part of the solution. If you are not a registered organ donor you are part of the problem.

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Advice columnist Carolyn Hax on organ donation

Washington Post advice columnist Carolyn Hax posts the follow letter from a reader in today's column:

Carolyn:

Just found out my boyfriend, whom I am thinking of a future with, is not an organ donor. He doesn't have any religious beliefs to speak of but said he would like to be buried whole.

I lost my lifelong best friend as she waited for an organ donation that never came. Do I have the right to broach such an intensely personal decision with my boyfriend? How do I approach it without putting him on the defensive? I feel that I can talk with him about a lot of things, but I don't want to be unreasonable because I am so emotionally invested in the issue.

This isn't a deal-breaker for me, I don't think. But it is something I want to discuss with him.

Here is Carolyn's answer:

Absolutely you can raise this issue, and I hope you do. It is intensely personal, and you can start by acknowledging that -- but it's also a public health issue. Not to mention, you're close to the point of pondering marriage, so personal questions aren't just permissible, they're necessary.

Explain that your experience gives you a different perspective, and ask him if he has considered the possibility that someone close to him might one day need an organ that never materializes. Or that he himself might.

And if he did need one, and one became available, would he accept it? What about a bone graft? Is it okay by him that other people aren't buried whole? Does he think it's morally consistent to live knowing that the medical safety net of donated organs is there for him, and that he's willing to avail himself of it, but not contribute to it himself?

Does he want his tonsils back?

Then he can revisit his stance, while you revisit your deal-breakers.

Carolyn asks a great question: "Does he think it's morally consistent to live knowing that the medical safety net of donated organs is there for him, and that he's willing to avail himself of it, but not contribute to it himself?" If more people were asked this question, fewer people would die waiting for organ transplants.

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LifeSharers in New Zealand

LifeSharers now has an affiliate in New Zealand. You can see a press release announcing the launch of LifeShaers New Zealand here. It’s great to see the LifeSharers idea take root internationally.

Andy Tookey is director of LifeSharers New Zealand. Andy is founder of GiveLife New Zealand and is New Zealand’s foremost organ donation advocate. The LifeSharers New Zealand web site is here . If you’d like to make a financial contribution to support LifeSharers New Zealand, you can do so here.

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Medical marijuana and organ transplants

According to an Associated Press story, Timothy Garon of Seattle needs a liver transplant:

His liver, ravaged by hepatitis C, is failing. Without a new one, his doctors tell him, he will be dead in days.

But Garon isn't getting a new liver. He's been refused a spot on the transplant list, largely because he has used marijuana, even though it was legally approved for medical reasons.

Many people think organs are given to the people who need them the most, and that organ allocation is based only on objective medical criteria. Mr. Garon's story shows that's not how it really works:

Because of the scarcity of donated organs, transplant committees such as the one at the University of Washington Medical Center have tough standards for deciding who should get them. Does a candidate have other serious health problems? Will he religiously take anti-rejection medicines? Is there good family support? Is the candidate likely to drink or do drugs?

This is the case nationwide, not just in Seattle:

The Virginia-based United Network for Organ Sharing, which oversees the nation's transplant system, leaves it to individual hospitals to develop criteria for transplant candidates. At some, people who use "illicit substances" — including medical marijuana, even in states that allow it — are automatically rejected. At others, such as the UCLA Medical Center, patients are given a chance to reapply if they stay clean for six months.

It's a myth that organs are allocated to the people who need them the most. It's a myth that only objective medical criteria are considered when allocating organs. Under the University of Washington Medical Center's standards, the person who needs an organ the most won't get one if he doesn't have good family support. Under UCLA Medical Center's standards, the person who needs an organ most won't get one if he's used marijuana in the last six months.

Critics of LifeSharers, which allocates organs first to registered organ donors, say LifeSharers doesn't give organs to the people who need them the most. That's a straw man. The national organ allocation system doesn't give organs to the people who need them the most. Critics also say LifeSharers introduces non-medical criteria into organ allocation. That's another straw man.

It's easy to see why it might not always make sense to allocate organs based only on need and objective medical criteria, given that there is a severe shortage of transplantable organs. Should an organ be given to someone who won't benefit from it because he has other serious health problems? Should an organ be given to someone who won't take the anti-rejection medicines needed to maintain the organ after surgery? Should an organ be given to someone likely to damage it by drinking or doing drugs?

Organs are allocated with questions like these in mind in order to maximize the benefit from transplanted organs. LifeSharers suggests adding one more question to the list: Is the person who needs the organ a registered organ donor? Adding this question to the list will increase the number of organs donated. That will save more lives. The overriding goal of our transplant system should be to save as many lives as possible.

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Should need govern who gets transplants?

An editorial about LifeSharers in today's Greensboro News & Record is titled: "Need should govern who gets transplants".

It's a nice theory, but that's not how it works in the real world. Organs are allocated based on value judgments that often override need. When the next organ becomes available in the United States, it won't be given to the person who needs it most. Instead, it will be given to the person on the waiting list who scores highest on a complex formula that includes things like age, location, race, and time spent waiting, as well as need. People who can't afford to pay for a transplant never even get on the waiting list. So it's not fair to criticize LifeSharers members for not giving their organs to the people who need them the most.

If you give organs first to registered organ donors, you get more registered organ donors. That saves more lives. Shouldn't saving the maximum number of lives be the goal of our transplant system? Anyone who wants to help achieve this goal by donating their organs to fellow organ donors is welcome to join LifeSharers at http://www.lifesharers.org/ or by calling 1-888-ORGAN88.

The editorial also suggests that LifeSharers members not receive organs from non-members. Let's apply this logic to the group I call LifeHoarders. Members of this group, which includes half of the adult population in the United States, haven't agreed to donate their organs when they die. Why not say that LifeHoarders can get organs only from other LifeHoarders? In other words, why not say that people who haven't agreed to donate can only get organs from other people who haven't agreed to donate? It's actually a great idea. If it was the law of the land, everyone would agree to donate, thousands of lives would be saved every year, and there would be no need for LifeSharers.

The editorial also draws an analogy between blood donation and organ donation, saying that it's a good thing blood isn't given only to blood donors. It's a bad analogy. There is no national blood waiting list or blood allocation system, and there aren't thousands of people dying every year because of blood shortages. In any event, LifeSharers has never suggested blood be handled the same way as organs.

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Organ transplants for illegal immigrants

A Los Angeles Times story highlights a controversial issue: should illegal immigrants receive organ transplants in the U.S. and should taxpayers pick up the cost?

The story presents arguments from both sides of this issue:

"All transplants are about rationing," said Roy Beck, executive director of NumbersUSA, which favors stricter controls on immigration. "I just don't think the public ought to be funding any kind of benefits for people who are breaking the law."

But Dr. Michael Shapiro, vice chairman of the ethics committee for the organ network, said illegal immigrants have just as much right to organ transplants as U.S. citizens. He said it is likely that more illegal immigrants donate organs than receive them. "People are people, and when you make an incision in an organ donor, you don't find little American flags planted on their organs," Shapiro said.

If there were more organ donors, this issue wouldn't be so controversial.

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Organ donor registrations are up in the United States

According to a press release from Donate Life America and Discovery Health, the number of registered organ donors in the United States is up 10% over the last 18 months.

Here are a couple of interesting facts from the press release:
- Only 35% of licensed drivers and ID card holders have committed themselves to donation by registering to be donors through their state registry or motor vehicle department.
- In 2007, only four states had a designation rate of at least 50%: Iowa (67%), Colorado (60%), Ohio (52%) and Utah (50%).

Clearly there's a whole lot of work left to be done in convincing people to register as organ donors.

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Organs for Organ Donors in Israel

According to an article on Ynetnews, a new organ donation law in Israel "includes an innovative clause giving preference to people who sign the donor card should they be in need of an organ transplant in the future."

This is the idea behind LifeSharers. I expect that someday a similar law will be passed in the United States, or that UNOS will change its organ allocation rules to make such a law unneccesary.

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Imperfect kidneys

Transplant surgeons are making broader use of kidneys that would once have been discarded, according to an article in the Grand Forks Herald:

Patients who would otherwise face long waits for a kidney are now often encouraged to consider organs from deceased donors older than age 60 or from younger patients who died of stroke or suffered from high blood pressure. Many transplant centers will now give a patient two low-functioning kidneys instead of one higher-functioning organ, as is customary.

“In a perfect world, it would be nice to get everyone a kidney from a younger donor,” said Dr. Robert Stratta, director of transplants at Wake Forest Baptist University Medical Center in Winston-Salem since 2001. “But we don’t live in a perfect world. Getting a kidney is better than not getting a kidney.”

So-called expanded-criteria donor organs are more likely to fail than kidneys from younger, healthier donors. Traditionally, such organs were considered unsuitable for transplant. But as the gap continues to widen between the number of patients seeking transplants and the number of organs available to them, Stratta and other transplant experts increasingly see them as an untapped resource.

The use of expanded criteria donor kidneys has increased about 30 percent since 2002, when the United Network for Organ Sharing (UNOS) set criteria for their use. These kidneys now account for nearly 11 percent of all kidney transplants.

People who need kidney transplants face a tough choice when offered an extended critieria kidney:

agreeing to an extended criteria kidney typically shaves a year off a patient’s wait. Higher-risk kidneys do tend to wear out sooner, lasting no more than eight years on average. A standard kidney transplant lasts an average of about 12 years.

We wouldn't have to use so many imperfect organs if Americans weren't burying or cremating 10,000 transplantable kidneys every year.

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UNOS' strange priorities

In a story in today's Indianapolis Star, LifeSharers member Dan Emerson sums up the idea behind LifeSharers: "the golden rule is a good road map for life, and those who promise to donate ought to move ahead of those who don't."

United Network for Organ Sharing spokeswoman Amanda Claggett disagrees: "The LifeSharers approach would essentially punish transplant candidates who haven't made a particular personal decisiion. And while we value that particular decision, we believe that the transplant system should neither reward nor punish people for their personal decisions or beliefs."

Ms. Claggett's statement shows exactly why so many people die in the United States waiting for organ transplants. UNOS, which runs the national transplant waiting list, could reward registered organ donors by giving them first access to donated organs. If UNOS did this, the supply of organs would go way up and thousands of lives would be saved every year. But UNOS would apparently rather let these people die than "punish" non-donors.

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Cold

An editorial in The Press of Atlantic City has this to say about LifeSharers: "Frankly, we like the approach promoted by a Nashville, Tenn., group called LifeSharers, which advocates changing transplant waiting lists to put people who have agreed to donate their own organs ahead of people who have not agreed to be donors. That's cold. But there's a certain elemental logic to it."

Giving organs first to registered organ donors is not cold. It creates an incentive for non-donors to become donors, and that saves lives.

What's really cold is burying or cremating organs that could save your neighbors' lives. Every year, Americans throw away 20,000 transplantable organs. And every year, over 8,000 Americans die because there aren't enough transplantable organs for everyone. That's about as cold as it gets.

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A survey of non-organ donors

The Patriot-News reports: "The Pennsylvania Medical Society, which wants people to be donors, recently surveyed non-donor licensed drivers to find out why they're not donors. It found 42.6 percent of them hadn't considered being an organ donor. Another 37.5 had considered it but don't feel comfortable being a donor."

The 42.6% who hadn't considered being an organ donor should consider what it would be like needing an organ transplant.

Of the 37.5% who don't feel comfortable being a donor, how many do you suppose would feel comfortable suffering while waiting for an organ transplant? They'd feel even less comfortable when they found out there was more than a 50-50 chance of dying before getting a transplant, while Americans who don't feel comfortable donating were burying or cremating thousands of transplantable organs every year.

Accoring to the survey, the other 20% of non-donors say they want to donate but haven't got around to signing up. The act of signing up is very important. Statistics show that if you've signed up to be an organ donor and told your family, your organs will be transplanted about 90% of the time if medically possible. If you don't sign up and tell your family, your family will refuse to allow donation about 50% of the time. This is why LifeSharers rewards the act of signing up to be an organ donor.

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Class-based organ donation?

The idea behind LifeSharers is that putting organ donors first on the transplant waiting list will increase the number of organ donors and save more lives.

In a story on WSBT TV in South Bend, Sam Davis of the Indiana Organ Procurement Organization compares putting organ donors first to excluding people by class.

This comparison is offensive. Also, putting organ donors first is legal, while (as Mr. Davis correctly points out) excluding people by class is illegal: "For example, I can't say, ‘Don't give that organ to a Jew, don't give it to a black, don't give it to a Muslim, don't give it to a minority, don't give it to anybody from Kentucky,’" Davis said.

The Wall Street Journal's "Best of the Web Today" (see the item titled "One of These Things Is Not Like The Others") adds their take: "the idea that favoring fellow organ donors is the equivalent of disfavoring blacks or Jews is twisted. The former approach seeks to give people an incentive to do something good; the latter punishes people for what they are. Davis might as well argue that a cop has no more business pulling someone over for driving while drunk than for driving while black."

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Free driver's licenses for registered organ donors

A bill introduced in the Vermont legislature would waive the $10 annual driver's license fee for anyone who registered to donate their organs when they die, according to an article in the Burlington Free Press.

This is a great idea. The state of Georgia used to offer discounted driver's licenses to registered organ donors, and it had a significant positive impact in donor registration rates. The discount program was ended after a few years, supposedly for budgetary reasons. See our previous post on this.

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Taking and giving organs

Only 38% of licensed drivers in Delaware are registered organ donors, according to an editorial in the Wilmington News Journal. I bet just about every single one of the other 62% would accept an organ transplant if they needed one to live. Where do you suppose these people think the live-saving organs they may need are going to come from?

It's just not right to be willing to take organs if you're not willing to give them.

About 50% of the organs transplanted in America go to people who haven't agreed to donate their own organs when they die. As long as we let non-donors jump to the front of the waiting list if they need a transplant we'll always have an organ shortage. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.

Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. Membership is free at http://www.lifesharers.org/ or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

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Rationing organ transplants

Nataline Sarkisyan died last month after her health insurance company refused to pay for a liver transplant but then changed its decision after a lot of negative publicity.

According to a story in the Philadelphia Inquirer, "Nataline Sarkisyan's case raises complex questions about how we ration resources - money and, in this case, transplantable livers - and how we make medical decisions in what one ethicist called 'last-chance' situations."

There aren't enough livers available to give one to every person who needs a liver transplant. Deciding to give a liver to one person means someone else won't get one. These are undoubtedly difficult decisions to make.

Deciding whether or not to donate your organs when you die seems very simple in comparision. But only about 50% of adult Americans have registered as organ donors. About half of the livers that could be donated are buried or cremated instead. The people who blow the easy decision about donating force the difficult decisions about rationing.

Under the organ allocation rules used by the United Network for Organ Sharing, people who won't donate pay no price for their decision. They remain eligible to receive a transplant if they ever need one. It's no wonder there is such a large shortage of livers.




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Mandated choice in New Jersey?

According to a story in the Courier-Post, proposed legislation in New Jersey would require people applying for driver's licenses and identification cards to state whether they want to be an organ donor.

The bill "would require applicants to answer whether they want to become an organ donor. If they decide to do so, their donor status would appear on their license and be maintained in a state registry. If they're not ready to make a decision or uncomfortable sharing it, they would designate someone to make that decision on their behalf when the time comes. If someone doesn't want to be a donor, they would check off a box acknowledging that."

If someone doesn't want to be a donor, they should also check off a box acknowledging that their decision means they'll be put at the end of the the waiting list if they ever need a transplant. Almost nobody would refuse to register as an organ donor if they knew it would affect their future chances of getting a life-saving transplant.

Every year Americans bury or cremate 20,000 transplantable organs, and every year about 8,000 Americans die because there aren't enough organs donated. Do the math.





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Help LifeSharers win $50,000

America's Giving Challenge will award $50,000 to 4 U.S. charities that get donations from the most people by January 31, 2008. They'll also award $1,000 to 100 U.S. charities.

Please help LifeSharers by making a tax-deductible donation of $10 or more. Just click on the donation badge to the right.

You can also help by spreading the word about this effort. Our donation badge is at http://www.networkforgood.org/pca/Badge.aspx?BadgeId=106227. If you'd like to show our badge on your web site or blog, please email us at info@lifesharers.org and we'll send you the information you need.

Thanks very much.

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