Everyone can be an organ donor

"It turns out that most people who've had cancer can donate both blood and organs," writes Bob Riter of the Cancer Resource Center of the Finger Lakes in the Ithaca Journal:

I called the United Network for Organ Sharing, the national organization that coordinates organ donations, and learned that they encourage everyone, even sick people, to check that they are organ donors. Upon death, they'll do a variety of tests to be sure the organs are usable. Cancer does not necessarily prevent a person's organs from being used to help someone else. It's the transplant team's job to sort out what they can use and what they can't.

Nobody should think they're too sick, or too old, to donate their organs when they die. If you needed an organ, you'd rather live with an imperfect organ than die waiting for a perfect one.

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Is Steve Jobs a registered organ donor?

"Reports that Apple CEO Steve Jobs traveled to an unidentified hospital in Tennessee for a liver transplant this March have sparked a debate over whether the wealthy are able to use their resources to game the national organ donation system," according to an ABC News story.

Did Steve Jobs jump the waiting list? Is it fair that Steve Jobs was on the waiting list at multiple transplant centers? Should multiple listing be allowed? These are the questions being asked.

Here is the question nobody is asking: Is Steve Jobs a registered organ donor? If he wasn't willing to donate his organs after his death, then he got an organ that should have been given to a registered organ donor.

If you'd like to donate your organs to other organ donors, please join LifeSharers at www.lifesharers.org. Membership is free.

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UNOS says deceased directed donation is legal

A few weeks ago, singer Natalie Cole received a kidney transplant through directed donation. The family of a deceased donor asked that her kidney be offered to Ms. Cole. The kidney turned out to be a good match for her, and the transplant was performed.

The United Network for Organ Sharing, which runs the national organ allocation system, decided to clarify the status of directed donation after Ms. Cole's transplant sparked a lot of public questions. Here is an excerpt from UNOS' news release:

Directed donation is a request made by a donor or donor family to transplant a specific recipient. This practice is legally authorized by the Uniform Anatomical Gift Act (UAGA) and by most state anatomical gift laws, which use the UAGA as a guide. (A few state laws are silent on directed donation but do not specifically disallow the practice.)

The policy of the national Organ Procurement and Transplantation Network (OPTN), operated by United Network for Organ Sharing (UNOS) under federal contract, recognizes directed donation as long as the agencies involved take steps to verify the medical suitability of the organ offer for the specified recipient. The Federal regulation that guides the OPTN (the OPTN Final Rule) expressly allows directed donation to a named individual.

In recent years, at least 100 deceased donor transplants each year have occurred through directed donation. Such requests occur most frequently when the donor or donor family either are related to the recipient or know the recipient personally. Past instances of directed donation that have resulted in media coverage include a daughter-to-father heart transplant and a heart transplant from a church member to the church's pastor. In many instances, only one organ from a deceased donor is directed to a specific recipient; other organs from the donor are allocated according to OPTN policy.

Directed donation is the process that LifeSharers members use to offer their organs to other LifeSharers members. Our donation process is carefully designed to comply with federal and state laws.

Some people say LifeSharers members donate their organs to a group (which is not allowed), not to a specific recipient. These people are misinformed. The LifeSharers donation agreement reads, in part: "For each organ of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in use by LifeSharers at the time of my death." When organs from a LifeSharers member become available, we rely on the member's next-of-kin to call LifeSharers at 1-888-ORGAN88, get the names of members who need those organs, and direct the donation of those organs to these specific recipients.

There have been suggestions that transplant personnel might not cooperate with this process. This is highly unlikely. In fact, it is specifically their job to cooperate, as UNOS' news release explains:

The role of transplant professionals is to ensure that any donor offer is handled properly and that the safety and interests of the donor and donor family are protected. This is true in the rare instance of directed donation as well as the commonplace, non-directed allocation of organs to transplant candidates.

It's hard to imagine that transplant professionals, who are all highly trained to do everything they can to facilitate organ donations, would not help make sure that legal directed donations take place.

Please join LifeSharers if you want to donate your organs to other organ donors.

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Steve Jobs' transplant highlights organ allocation unfairness

"Apple Inc. CEO Steve Jobs's decision to travel to Tennessee for a liver highlights the significant disparities in transplant waiting times across the country -- the source of a longstanding controversy over the fairest way to distribute scarce organs," according to a story by Laura Meckler in the Wall Street Journal. The waiting time for a liver transplant in Tennessee is much shorter than it is elsewhere.

Disparities in waiting times are not the only unfair aspect of organ allocation in the United States. Under the rules written by the United Network for Organ Sharing, people who haven't agreed to donate their own organs when they die get treated the same as registered organ donors. It's not fair to give organs to non-donors as long as there are registered organ donors who need them.

If UNOS gave organs first to organ donors it would create an incentive for non-donors to donate. More organ donors means fewer people dying waiting for organ transplants.

In the face of UNOS inaction on this, LifeSharers has created a way for Americans to donate their organs to other organ donors. We use directed donation, which is the process that got Natalie Cole her kidney a few weeks ago. Directed donation is legal under federal law and under the laws of all 50 states.

Anyone who wants to donate their organs to other organ donors can join LifeSharers at www.lifesharers.org.

And by the way, many people think organs are allocated first to the people who need them most, but that's now how the system works. Instead, geography plays a big role, as Ms. Meckler explains:

The current system relies heavily on illness and geography, with the chances of getting a donated liver much better for those waiting in the same local area as the donor. In many cases, priority is given to those who sign up locally, even if there are sicker patients waiting in the next city or next region.

Keep this in mind the next time you hear someone criticize LifeSharers because our system doesn't give organs to the people who need them the most.

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More old people dying waiting for transplants

Nearly half of kidney transplant waiting list patients over age 60 are at risk of dying before they receive a deceased-donor organ, according to a paper published in the Clinical Journal of the American Society of Nephrology.

A MedPage Today story says the paper's authors projected that 46% of older patients placed on the waiting list in 2006-07 would die before receiving a deceased-donor transplant, up from a projected 22% in 1995.

The waiting time for a deceased-donor transplant rose significantly from 1995 to 2007, as demand for transplantable organs grew faster than supply.

Things may get even worse for older patients who need transplants. The United Network for organ sharing is studying a proposed policy for organ allocation that would give younger patients more rapid access to deceased-donor transplants at the expense of older patients.

Meanwhile, half of the organs that could be donated are buried or cremated instead. A big reason for this is that UNOS allocation policies allow people who haven't agreed to donate their organs when they die to remain eligible to receive organs if they need one to live. If UNOS allocated organs first to registered organ donors, more people would donate their organs and fewer people would die waiting for transplants.

If you'd like to donate your organs to other registered organ donors, please join LifeSharers at www.lifesharers.org.

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Law should require people who need transplants to be organ donors, says OPO exec

Susan Stuart, President and CEO of the Center for Organ Recovery & Education, has expressed support for one of the ideas behind LifeSharers. Ms. Stuart's organization is the federally designated organ procurement organization for parts of western Pennsylvania, West Virginia, and New York. LifeSharers is a national organ donation network. LifeSharers promotes the concept that everyone who is willing to receive an organ transplant should be willing to be an organ donor.

Here is an excerpt from a story in today's Pittsburgh Post-Gazette:

"If [the United Network for Organ Sharing] allocated organs first to registered organ donors, more people would donate and thousands of lives would be saved every year," David Undis, LifeSharers executive director, said last year.

The concept gets support from CORE's Ms. Stuart.

"I think there should be legislation that if you are put on the waiting list for an organ, you have to be a donor yourself. It's very discouraging when we have a transplant recipient and they die and we approach the family about donations and they say no."

Ms. Stuart's statement is refreshing. Some OPO executives seem to view LifeSharers as a competitor, but our view is that LifeSharers and the OPOs are all on the same team. We're all trying to increase the number of organ donors.

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Directed donation works for Natalie Cole

Natalie Cole, the famous singer, has received a kidney transplant through directed donation. This is the process that LifeSharers members use to give their organs to other LifeSharers members.

Here are some details from a news release issued by OneLegacy:

OneLegacy, the non-profit, federally designated organ and tissue recovery organization serving the seven-county greater Los Angeles area as part of the national organ transplantation network, facilitated the transplant of a kidney to Natalie Cole via a directed donation from a deceased donor.

"As stewards of the organ donation process, OneLegacy collaborates with area hospitals to support families facing the loss of a loved one," said Tom Mone, OneLegacy CEO and Executive Vice President. "One such family generously agreed to donate organs to people in need of a life-saving transplant. Having heard of Ms. Cole's need for a kidney, the family asked that one of their loved one's kidneys be transplanted to Ms. Cole if they were a match."

In accordance with the family's request, OneLegacy donation coordinators then determined through tests that the kidney would be a biological match for Ms. Cole and coordinated the recovery process.

Directed donation is a specific request made by a donor or donor family to direct a recovered organ to a specific transplant recipient. While rare, this practice is recognized by the California Uniform Anatomical Gift Act (UAGA) and occurs most frequently when the donor or donor family are related to the recipient or know the recipient personally.

In a 2006 story on CNN, a OneLegacy representative criticized LifeSharers' use of directed donation, saying "any time you work outside of the established allocation process, you're not necessarily giving the organs to people that are most in need." Now in 2009, OneLegacy's CEO praises the generosity of the family that used directed donation to help Natalie Cole. Was Natalie Cole the person most in need? No, but it was the donor family's legal right to give her their loved one's kidney.

What does the Natalie Cole case prove? It proves that directed donation is legal. It's legal whether organ procurement organizations like it or not, and it's legal whether the recipient is a celebrity or not. Directed donation as practiced by LifeSharers members is legal under federal law and under the laws of all 50 states.

If you'd like to donate your organs to other organ donors, please join LifeSharers at www.lifesharers.org.

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Transplant statistics all bad news

The number of deceased organ donors in the United States went down in 2008. So did the number of live organ donors. According to an article on NephrOnline, this is the first time this has happened since UNOS started tracking donor statistics 20 years ago.

According to UNOS data, the number of transplants in the United States also went down in 2008. What went up? The number of people waiting for transplants, and the number of people added to the transplant waiting list. The transplant waiting list hit 100,000 for the first time in 2008. About 50,000 more people will join the list in 2009.

Is there any good news? According to the NephrOnline article, "UNOS also noted that the reported deaths on the transplant waiting list have decreased each year nationwide since hitting a peak of 6,926 in 2004. The current data shows there were 6,229 reported deaths in 2008."



With fewer donors, fewer transplants, and more people waiting can it really be that fewer people are dying? As it turns out, the answer is no. This statistic only measures people who were removed from the waiting list because they died. There's another important category: people who were removed from the waiting list before they died. These people are removed from the list because while they were waiting they became too sick to undergo transplant surgery. This number has been going up.



These people usually die shortly after being removed from the waiting list. If you add these people to the people who died while still on the waiting list, you get a better picture of annual deaths from the organ shortage. Annual deaths continue to increase.



More than half of the people on the waiting list will die before they get a transplant, and the organ shortage keeps getting worse every year. LifeSharers has published a proposal that will turn things around: UNOS should establish two waiting lists. UNOS should have an 'A' list for registered organ donors and a 'B' list for non-donors. UNOS should allocate an organ to someone on the 'B' list only if it isn't needed by anyone on the 'A' list.

More people would donate their organs if refusing to donate would put them on the 'B' list. If UNOS adopted the LifeSharers proposal, thousands of lives would be saved every year.

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Who is punishing who?

A story aired on ABC TV in our nation's capitol says:

Professionals in the medical community are discussing a controversial proposal that would change the way people are placed on the national organ donor waiting list.

An organ donor network called LifeSharers wants the list to give preference to patients who signed up to be organ donors before they became sick.

According to the story:

The United Network for Organ Sharing, the non-profit organization that maintains the national waiting list, does not agree with the proposal. They believe it punishes transplant candidates who haven't made the personal decision to donate themselves.

Who is punishing who here? If I "haven't made the personal decision to donate", I have made the personal decision to bury or cremate organs that could save several lives. I have made the personal decision to punish my neighbors.

On the other hand, giving a preference to patients who signed up to be organ donors before they became sick will increase the number of organ donors. This helps everyone, even non-donors.

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Rewarding donors will produce more donors

LifeSharers released a proposal last year calling for the United Nework for Organ Sharing to create two transplant waiting lists in the United States -- the 'A' list for registered organ donors, and the 'B' list for everybody.

Under this proposal, all organs would be allocated to people on the 'A' list, with non-donors on the 'B' list only getting organs not needed by registered organ donors. If UNOS did this, just about everyone would register as an organ donor. Very few people would refuse to donate if refusing meant they'd probably never get an organ transplant if they ever needed one.

USA Today published a story about some reactions to this proposal, including this:

Mark Fox, associate director of the Oklahoma Bioethics Center at the University of Oklahoma-Tulsa, says fixes such as the LifeSharers plan have "inherent logic" to them.

Perhaps prior willingness to donate could factor in as a "tiebreaker" in awarding organs, but he says there is no evidence such a plan would increase donation.

Since the LifeSharers plan hasn't been implemented, there is of course no "evidence" that it would increase donations. But there is every reason to think it would do exactly that. It's basic human nature. When you reward a behavior, you get more of it.

More from Dr. Fox:

"We are an age- and death-defying society," he says. Most people do not sign up to donate because they do not think about their own medical frailties, he says.

The LifeSharers plan gives people a good reason to think about their medical frailties. If you think about the possibility you might someday need a transplant, and if you know you probably wouldn't get one if you didn't sign up to be a donor, you will probably sign up to donate.

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Rearranging the deck chairs on the Titanic

The St. Louis Post-Dispatch reports that the Kidney Transplantation Committee of the United Network for Organ Sharing is considering changing the way kidneys from deceased donors are distributed:

The committee discussed three concepts that could be used in a new system to determine who gets kidneys:

— A formula that determines how long a patient can expect to live after receiving a new kidney.

— The amount of time a patient has been receiving dialysis treatments.

— A measure of the quality of the donated organ in relation to the candidate's age and health.

This is like rearranging the deck chairs on the Titanic. None of these changes will do anything to increase the supply of kidneys.

UNOS continues to treat organ allocation as a zero-sum game. It doesn't have to be that way. UNOS can increase the supply of organs by allocating donated organs first to people who have agreed to donate their own organs when they die.

If UNOS did this, just about everyone would sign up to be an organ donor. It would also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the transplant waiting list.

America doesn't have an organ shortage. We have an organ donor shortage. Americans bury or cremate 20,000 transplantable organs every year. About 8,000 Americans die every year waiting for organ transplants. UNOS should do the math.

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Willing to take? Willing to give?

Michigan's Daily Tribune published an editorial today titled "We should all be willing to give a Gift of Life". It begins:

Ask yourself and your loved ones: Would you accept the transplant of someone else's organ - a heart, liver, kidney, lung — if it would extend your life?

Have you signaled your intention to donate your own organs in the event of your death, through conversation with your family, online with the Michigan Gift of Life folks or on the back of your driver's license?

What's that?

You haven't?

Do you see a problem here?

We do. And so should you.

Kudos to the Daily Tribune for highlighting the link between organ donation and life-saving organ transplants. There can be no organ transplants without organ donors. That's why LifeSharers members give registered organ donors preferred access to their organs. This creates an incentive for non-donors to become donors. It also helps make the transplant system fairer.

The editorial points out that only about 20% of Michigan adults are registered organ donors. Shouldn't the other 80% go to the back of the transplant waiting list as long as there is a shortage of organs?

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Sad

The News Leader of Staunton, Virginia, published an editorial about LifeSharers' proposal that donated organs should be allocated first to registered organ donors. The editorial states:

If this proposal would make more people sign up to become organ donors, it's a beautiful thing.
But still, isn't it sad that it's come to this?

It is sad. It's sad that over 8,000 Americans die every year while their neighbors bury or cremate the organs that could have saved their lives. It's also sad that people need an incentive to donate organs that they can't even use any more. LifeSharers provides a powerful incentive -- if you agree to donate your organs through LifeSharers after you die, we'll increase your chances of getting a transplant should you ever need one to live.

The editorial also said:

this is a sad situation that can be remedied by more information, education and
the generous commitment of Americans toward strangers.

Sadly, that's not the case. Millions and millions of dollars have been spent on information and education but the organ shortage continues to grow. And if "the generous commitment of Americans toward strangers" could reduce the organ shortage then the shortage wouldn't exist in the first place.

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U.S. Transplant Waiting List Hits 100,000 – America Needs Two Waiting Lists, Not One

The waiting list for organ transplants in the United States has topped 100,000 people. America needs two transplant waiting lists, according to LifeSharers, a national network of organ donors: the ‘A’ list for registered organ donors and the ‘B’ list for people who have not agreed to donate.

Read our full news release here.

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Incentives are not extortion

In a column in today's New Haven Register, Science Editor Abram Katz writes about how to create an incentive for people to donate their organs:

One suggestion is to give potential donors a break if they need an organ. People who agreed to be organ donors would go to the front of the line if they needed organs.

The problem is that if the plan worked, there would be thousands upon thousands of prospective donors. Two lists would develop: one for the reluctant, and another for the professed donors. The "reluctants" would only receive organs after all of the donors were taken care of. That might increase donations, but it smacks of extortion.

By Mr. Katz' logic, any incentive is extortion. Is it extortion to not give a paycheck to someone who refuses to work? Is it extortion to award lottery jackpots only to people who bought tickets?

Even if you agree with Mr. Katz' definition of extortion, you have to ask yourself if a little extortion is justified if it saves lives by increasing organ donations. Americans bury or cremate 20,000 transplantable organs every year. Most of those organs would be donated, instead of being wasted, if people knew they'd go to the back of the transplant waiting list if they refused to register to donate. As long as we give organs to people who aren't willing to give, we'll always have an organ shortage.

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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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