MatchingDonors.com -- a wonderful success story

Rob Smitty donated a kidney to Bob Hickey on October 20, 2004. Mr. Smitty met Mr. Hickey through at web site called MatchingDonors.com.

This was the first transplant arranged by MatchingDonors.com. In the year since that operation, 16 people have received transplants through the MatchingDonors.com web site. What a wonderful success story!

A few days ago, the national transplant waiting list exceeded 90,000 people for the first time. The list would be much larger if not for the tremendous generosity of live organ donors.

Just as MatchingDonors.com is using the internet to increase the number of live organ donors, LifeSharers is using the internet to increase the number of people who agree to donate their organs when they die.

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Directed donation is not unfair

Today's Philadelphia Inquirer has an excellent opinion piece about organ donation. The author is Jason Lott of the University of Pennsylvania Medical School.

Mr. Lott mentions that critics of directed donation say it is harmful because individuals could unfairly "break in line" ahead of others to receive their organs.

This criticism assumes that organs belong to the people who need them. But organs belong to donors. Federal law allows directed donation. So do the laws of all fifty states.

LifeSharers members want their organs to go to others who have agreed to donate their own organs when they die. Nothing could be fairer. Allocating organs this way also encourages more people to register as organ donors, and that saves lives.

People who won't donate their own organs have no business complaining about directed donation. They have no legitimate moral claim to a place in the transplant waiting list.

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A bad argument against directed donation

Some bioethicists want to take away your right to decide who gets your organs when you die. They say experts should decide who gets your organs.

Arthur Caplan contributes the worst argument against directed donation that I've seen. He is chairman of the Department of Medical Ethics and director of the Center for Bioethics at the University of Pennsylvania. In a speech printed in Science & Theology News, he says: "I don’t think donation is just a matter of individual liberty and choosing what you want to do with your parts, alive or dead. Part of what goes on with a directed donation is that we all wind up paying, to some extent, for the cost of that transplant. The public pays for the training of the people, reimbursing out of Medicare or Medicaid for much of the cost."

Professor Caplan thinks you shouldn't be able to decide who gets your organs because the public pays for some of the costs of transplant operations. But the public pays for some of the cost of just about everything. Under Professor Caplan's logic, experts would control over just about everyhing.

The public pays for some of the costs of treating obese patients. Does this mean experts should be able to decide what you eat? The public pays for some of the costs of treating people hurt in motor vehicle accidents. Does this mean experts should be able to decide what car you drive? The public pays for some of the costs of treating children injured playing sports. Does this mean experts should be able to decide what sports children play?

Professor Caplan's argument can be used to justify just about anything. An argument like that is no argument at all.

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AMA suggests studying presumed consent and mandated choice

The American Medical Association has adopted a new policy that "calls for physicians to encourage and support pilot studies that investigate the effectiveness of presumed consent and mandated choice for organ donation." (You can see the AMA's press release here.)

In presumed consent, a willingness to donate is assumed unless an individual specifically opts out by withdrawing consent. In mandated choice, individuals are required to express a preference for or against organ donation.

It's good to see the AMA trying to do something to help increase organ donation rates. Presumed consent and mandated choice would both probably help reduce the organ shortage -- if they were legal. But they're not, and it's extremely unlikely they will become legal in the forseeable future. Both of these policies are controversial. Neither of these policies enjoys broad-based support. So there's no reason to think Congress or state legislatures will legalize them.

Rather than support policies that are not legal and will not become legal, the AMA should throw its weight behind an already-legal policy that can quickly reduce the organ shortage. The AMA should urge the United Network for Organ Sharing to start allocating organs first to registered organ donors.

Imagine UNOS announced that, until the organ shortage was eliminated, it was going to stop giving organs to people who weren't registered organ donors. Millions and millions of people would register. Thousands of lives would be saved every year.

LifeSharers is implementing this policy from the ground up, and we will eventually put a big dent in the organ shortage in the United States. UNOS can accomplish the same thing much faster by implementing the LifeSharers approach from the top down. UNOS has the power. It should use it.

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Whose organs are they, anyway?

Dr. Douglas Hanto, a transplant surgeon in Boston, wants to stop you from deciding who gets your organs when you die. Unless, of course, you decide to give them to the kind of people he approves.

At a meeting in Chicago earlier this month, Dr. Hanto suggested limiting directed donation. "Directed donation, except in the context of relatives or emotionally related friends, unfairly directs organs away from the neediest patients on the waiting list, and in the case of deceased donor organs, bypasses approved allocation policies and should not be permitted," said Hanto, who represented the American Society of Transplant Surgeons at the meeting. (See this article in the St. Louis Post-Dispatch for more.)

If Dr. Hanto tried to stop people from deciding who got their charitable contributions (or who got their property when they died) most people would be outraged. It's even more outrageous to tell people they can't decide who will get their organs when they die.

Stopping people from deciding who will get their organs would also cause fewer people to donate their organs. That would mean more people would die waiting for transplants.

I want my organs to go to other organ donors. So do over 3,100 people who have joined LifeSharers. They're our organs, Dr. Hanto, and we'll decide who gets them.

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Is your life worth $7? How about your neighbor's life?

In Georgia, you get a $7 discount on your drivers license fee if you register as an organ donor. The state legislature has passed a bill, backed by the governor, to end this discount.

According to a story in Monday's Savannah Morning News, data from the Georgia Department of Motor Vehicle Safety shows that drivers who are eligible for the discount are up to 40% more likely to sign up as donors than those who don't qualify for the discount, such as veterans who get their licenses for free.

That's a whole lot of people who would rather bury their organs than save several lives if they don't get $7. This is more proof that altruism will not solve the organ shortage. There just aren't enough people who are generous enough to share the gift of life with their fellow man.

To get more organs, we need to provide people with an incentive. That's what LifeSharers does. We give people a better chance of getting an organ if they ever need one to live, in exchange for a promise to donate their organs when they die.

There's another benefit to joining LifeSharers -- your organs are less likely to go to someone who thinks your life is worth less than $7.

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The good news and the bad news about organ donation

The number of organ transplants in the United States increased 6% in 2004. That's over 27,000 lives saved. Organs from deceased donors were up 11%, and organs from live donors were up 2%. That's the good news.

Here's the bad news:
- Last year 43,128 people were added to the national transplant waiting list.
- Last year 6,228 people were removed from the waiting list because they had died. Another 1,594 were removed from the list because they had become too sick to undergo transplant surgery.
- At the end of 2004, over 87,300 people were on the national transplant waiting list. That's up from about 83,900 at the end of 2003.

Here's more bad news. While 90% of Americans support organ and tissue donation:
- only 62% say they would be willing to donate some or all of their organs and tissue when they die, and
- only 55% of Americans agree to donate the organs of a deceased relatives when asked for their consent.

The organ shortage continues to get worse because Americans bury or cremate about 20,000 transplantable organs every year. That means thousands of Americans are buried every year next to the organs that could have saved their lives.

Most people don't have any good reason not to donate their organs when they die. But they don't have any good reason to donate them either. LifeSharers gives people a good reason - a better chance of getting a transplant if they ever need one.

Data sources:
Fox News
UNOS
Coalition on Donation

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Change Organ Allocation to Increase Organ Supply

(The following is the text of a speech, as prepared for delivery, at a DePaul Law Review and Health Law Institute Symposium: “Precious Commodities – The Supply and Demand of Body Parts” in Chicago on March 4, 2005)

CHANGE ORGAN ALLOCATION TO INCREASE ORGAN SUPPLY
by
David J. Undis

If we change how we allocate organs we will get more organs to allocate.

We should allocate organs first to people who have agreed to donate their own organs when they die. This will cause many more people to register as organ donors, and save thousands of lives every year. Increasing the supply of organs this way is fair and simple, and it can be implemented without legislative action. It is already legal.

Would changing the organ allocation system really increase the supply of organs?

Imagine that the United Network for Organ Sharing made the following announcement tomorrow: “Beginning January 1 of next year, we will make no human organ available for transplantation into any person who is not a registered organ donor. The only exceptions will be directed donations and cases where no registered organ donor matches an organ that is available.”

Following the announcement of this policy change, millions and millions of people would register themselves and their children as organ donors. Wouldn’t you?

Registering as an organ donor would give you a better chance of getting an organ if you ever needed one. Deciding not to register would reduce your chance. When you consider that more than half of the people who need a transplant in the United States die before they get one , improving your odds could literally mean the difference between life and death. Agreeing to donate your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live. Almost everyone would decide to pay that price. The supply of organs would go way up, and thousands of lives would be saved every year.

Last year, there were about 7,000 deceased organ donors in the United States, and they provided the organs for about 20,000 transplants. But organs are transplanted from less than half of the eligible deceased donors. That means we could get up to 20,000 additional organs every year by changing the organ allocation system. To put that number in perspective, keep in mind that last year about 6,000 people were removed from the national transplant waiting list because they died and 1,500 more were removed because they became too sick to undergo surgery. So with an additional 20,000 organs per year, we could eliminate most of those deaths, reduce the size of the waiting list, and shorten waiting times for people still on the list.

We don’t need medical breakthroughs to achieve these results. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about 50% of the organs that could be transplanted. They bury or cremate the rest. All we need to do is convince people to stop throwing away organs that could save their neighbors’ lives. Changing how we allocate organs will produce that behavior change.

The idea of giving registered organ donors an allocation preference is not new. It has been around for at least 15 years. Everyone who has suggested it has predicted that it would significantly increase the supply of organs. Some have said it would completely eliminate the waiting list. Even opponents of the idea generally concede it would increase supply. They say it isn’t fair.

So, is it fair to allocate organs first to registered organ donors?

Yes, in fact it makes the organ allocation system fairer.

What isn’t fair is giving an organ to someone who won’t donate their own, when there is a registered organ donor who needs it. It’s like awarding the lottery jackpot to someone who didn’t buy a ticket.

When you die, you can bury your organs, cremate them, or donate them and save lives. When those are your only choices, deciding not to donate is a spectacularly selfish thing to do. People who make that decision have no moral claim to an organ transplant.

Without organ donors there can be no organ transplants. Giving organs first to organ donors produces more organ donors, and that saves more lives.

The primary goal of the organ allocation system should be to save as many lives as possible. Other goals should be secondary.

It would be simple for UNOS to change its allocation system to put registered organ donors first. UNOS could simply add a field to its waiting list database. That field would show whether or not a potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.

Putting organ donors first has an important advantage over most other suggestions for increasing the supply of organs. No legislative action is needed to implement it. UNOS already has the authority to give registered organ donors an allocation preference. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper titled “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”

In fact, UNOS already moves live donors up the waiting list if they later need a transplant. UNOS can, and should, do the same for people who agree to donate when they die.

Congress has never made tackling the organ shortage a priority, and there is no reason to think they will do so in the foreseeable future. Anyone who cares about the more than 87,000 people now on the national transplant waiting list should an approach to increasing the organ supply that does not depend on legislative action.

To review, changing the national organ allocation system could save thousands of lives a year and improve the system’s fairness. And UNOS has the power to implement this simple change. So, what is UNOS’ position on this? It hasn’t really taken one.

The closest it came to doing so was in 1993. But its white paper on the subject ultimately stopped short. It only recommended “wider societal discussion before considering concrete plans for implementation” of any system.

UNOS has not led the discussion it recommended. It has been largely silent on the subject since the publication of its white paper almost 12 years ago. That is unfortunate. Over 55,000 people on the UNOS waiting list have died over the last 10 years. Most of those deaths could have been prevented.

Fortunately, as individuals we don’t need to wait on UNOS to increase the organ supply from the top down. We can attack the problem from the ground up.

You can allocate your own organs. You can offer them first to registered organ donors who will do the same for you. That is the premise behind LifeSharers.

LifeSharers is a grass-roots organ donation network. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership is free and open to all at www.lifesharers.com. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we turn no one away. LifeSharers has over 2900 members, including members in all 50 states and the District of Columbia. Over 300 LifeSharers members are minor children enrolled by their parents. LifeSharers is organized as a 501(c)(3) non-profit organization and is staffed by unpaid volunteers. Our operations are funded by tax-deductible contributions.

The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.

The law here in Illinois is typical. It allows donation of body parts to “any specified individual for therapy or transplantation needed by him or her.”

That is exactly what LifeSharers members do. We carefully follow the law. We donate each of our organs to a specified individual. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I would want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.

At the federal level, the Organ Procurement and Transplantation Network’s “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”

Again, LifeSharers carefully follows the law. When a member dies in circumstances that permit recovery of their organs, we provide their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.

So, LifeSharers is legal. But can a grass-roots effort really reduce the organ shortage in America? Again, the answer is yes.

LifeSharers gives Americans an incentive to donate their organs when they die, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, joining LifeSharers gives you a better chance of getting an organ if you ever need one.

As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a pool of a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can give a big boost to the supply of organs in America.

No LifeSharers member has yet died in circumstances that would have permitted recovery of their organs, but it’s just a matter of time. At our current membership level, there is about a 14% chance that organs will be recovered from one or more of our members in the next twelve months. When LifeSharers members start getting organs from other members, we expect a whole lot of publicity and a very large jump in our membership.

LifeSharers can’t increase the organ supply as fast as UNOS could if they implemented our approach. But I predict LifeSharers will put a big dent in the organ shortage before any effective legislative action is taken to reduce it.

So, LifeSharers is legal, and it will work. But is it fair? Again, the answer is yes.

I’ve already covered this issue from the demand side – that is, from the standpoint of the people who need organs. It’s also important to look at this issue from the supply side – that is, from the standpoint of the people who donate organs.

If you want to give your organs to other organ donors, is it ethical to override your wishes and give them to someone else? No, clearly it is not. But efforts are under way to do exactly that. Some bioethicists have suggested making it illegal for you to direct the donation of your organs to someone who doesn’t have a relationship with you that fits their criteria.

Imagine you wanted to give some groceries to a poor person. Then imagine some “experts” tried to force you to give them instead to the United Network for Grocery Sharing, so it could decide who gets them. I expect you would find that offensive. It is even more offensive when “experts” say they should decide who gets your organs when you die.

So, what does UNOS have to say about LifeSharers?

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.”

But UNOS has also said it doesn’t believe LifeSharers has made an “appropriate interpretation of the intent of directed donation” since “the only connection between donor and recipient is that they share membership” in LifeSharers. LifeSharers has made no interpretation of any sort. State and federal laws regarding directed donation are clear and they are plainly written, and we carefully follow them as written. UNOS is the one doing the interpreting, not LifeSharers.

LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.

Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would increase the supply of organs a whole lot faster than LifeSharers will.

Allocating organs first to organ donors can save thousands of lives a year. Nothing could be simpler, nothing could be fairer, and nothing in the law says we can’t make it happen.

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Netherlands may give transplant priority to registered donors

In the Netherlands, Health Minister Johannes Hoogervorst wants to give priority on transplantation waiting lists to people who are registered as donors. It's nice to see that the idea that organs should go first to organ donors is catching on outside of the United States.

Here is an article from Expatic News:

Plan to give organ donors transplant priority

4 March 2005

AMSTERDAM — Health Minister Hoogervorst wants to give priority on transplantation waiting lists to people who are registered as donors, but MPs slammed the proposal on claims it will introduce discrimination in healthcare.

The Liberal VVD minister defended his proposal by pointing out that Muslims often refuse to donate organs based on religious beliefs. This is despite the fact they are willing to receive an organ if they are ill. "That creates a bad feeling," he said.

"If you say: 'I refuse to donate an organ because of my religion, but I don't want to receive one either', than I will respect it. But I won't respect a one-sided attitude of receiving and not giving. I find that problematic," Hoogervorst said.

After the parliamentary debate on organ donation, the minister said it is not just a few Muslims who refuse to give and whom are willing to receive an organ donation. It is instead a substantial group.

Hoogervorst said immigrants often have poorer health and will require a transplant more often than native Dutch. Due to the shortage of organ donors — especially kidneys — some 200 people die every year in the Netherlands, newspaper De Volkskrant reported.

The minister came to his conclusion in recent months during talks with medical specialists. At the request of Parliament, he will now draw up a detailed proposal.

Hoogervorst is considering a system in which registered donors receive extra points on organ transplant waiting lists, meaning they will get an organ sooner. The Cabinet has not yet determined its stance on the issue.

The Christian Democrat CDA and Labour PvdA led parliamentary opposition to the plan, but nearly all political parties expressed fears that Hoogervorst was introducing discrimination in healthcare. They are concerned that smokers and overweight people will also receive help later than other people.

But Hoogervorst rejected proposals to automatically register the entire population as potential donors, despite the fact that most of the opposition parties and government coalition partner Democrat D66 think that the system will yield more donors.

MPs will vote on automatic organ donation next week, but the proposal is not assured of a majority due to a difference in opinion between Labour PvdA and the Socialist SP party over the type of system to be introduced.

[Copyright Expatica News 2005]

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Transplant denied!

Patrick Garrity wants to donate one of his kidneys to his friend Alex Crionas. Because Mr. Crionas had created a web site to recruit a donor, the LifeLink transplant center in Tampa is refusing to test Mr. Garrity to see if he is a suitable match, according to a story in today's Tampa Tribune.

LifeLink's behavior is outrageous.

If you agree, please send an email to Dr. Victor Bowers, the Medical Director at LifeLink. His email address is Bowers@lifelinkfound.org. Please also send a letter to the editor of the Tampa Tribune. You can access their online form at
http://feedback.tbo.com/

There is nothing illegal about using the internet to try to improve your chances of getting an organ transplant.

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Not all slopes are slippery

The Dallas Morning News published a story yesterday about LifeSharers.

The story quotes Pam Silvestri, a persistent critic of LifeSharers. She works for the Southwest Transplant Alliance, the organ procurement organization that services the Dallas area. She says LifeSharers is a "slippery slope" because if LifeSharers succeeds, "what's to stop dozens of lists from being created that allow special access based on other agendas ... race, religion, etc.?"

Some slopes aren't slippery, and this is one of them. Giving organs first to Hispanics doesn't produce more Hispanics, and giving organs first to Catholics doesn't produce more Catholics. But giving organs first to organ donors produces more organ donors, and that saves lives. That's the whole idea behind LifeSharers.

Besides, is it necessarily a bad thing for organ donors to give special access to members of their own race or religion? If it produces more organ donors and saves more lives, I say it's a good thing.

Ms. Silvestri also says LifeSharers won't work. She says it isn't practical for a LifeSharers member to offer their organs to a fellow member "because the organs might not match anyone in the LifeSharers group...and the small number of people in that group likely won't ever be in a position to donate. And even if they were, it is unlikely that the others in the group will be on the wait list for an organ."

Ms. Silvestri misses the point. It is possible that a member's organs won't be a good match for any other member, but the odds of that go down every time we get a new member. She is also misinformed. We already have 21 members "on the wait list for an organ" and statistically it's a virtual certainty that sooner or later a LifeSharers member will "be in a position to donate."

Ms. Silvestri and her colleagues at the OPOs around the country should be helping LifeSharers, not criticizing us. We recruit organ donors. That helps the OPOs. It also helps save lives. Isn't that what the OPOs are in business to do?

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