Transplant Smackdown - Organ Bureaucrats Attack Organ Donors

[okarol]

December 4, 2007

Transplant Smackdown - Organ Bureaucrats Attack Organ Donors

Dave Undis
Reader Submitted

LifeSharers, a grass-roots network of organ donors, is defending the rights of organ donors against an assault launched by the Association of Organ Procurement Organizations.

LifeSharers is a network of over 10,000 registered organ donors who want to donate their organs to other organ donors. The AOPO is a lobbying and support group for federally-licensed organ procurement organizations.

LifeSharers members use a process called directed donation to offer their organs first to other organ donors when they die. AOPO's document titled "Talking Points: Countering LifeSharers" criticizes organ donors for exercising their right to determine who gets their life-saving gift. That right is enshrined in federal and state law.

"AOPO acts as if our organs belong to them, not to us," says Professor Lloyd Cohen of the George Mason University Law School. "They want our organs, but they don't want us to have any say in who gets them. They ignore our legal right to determine who gets our life-saving gift. Does AOPO feel similarly about other private charity? Should we not be permitted to support those who we deem deserving? Or is it only our organs that they would prohibit us from donating on that basis?"

While LifeSharers members believe organs should be given first to registered organ donors, AOPO says that only medical factors should determine who does and does not receive an organ from a deceased donor.

"The logical extension of AOPO's argument would be to forbid a grieving widow from giving her husband's heart to their daughter if someone else needed it more," says Professor Steve Calandrillo of the University of Washington Law School. "I can't imagine how AOPO thinks this helps the cause of organ donation. If you tell people they can't decide who gets their organs, then fewer people will donate their organs and more people will die waiting for transplants."

AOPO claims the national organ allocation system is fair, and that organs are allocated solely according to medical criteria.

"AOPO claims that a system based entirely on medical criteria is fair. But that's just their view," says David R. Henderson, associate professor of economics at the Naval Postgraduate School. "What's really fair is letting organ donors decide who gets their organs, not doctors and bureaucrats. LifeSharers members are exercising their legal right to donate their organs to designated individuals. AOPO should honor the wishes of organ donors who wish to exercise that right, and it should do everything it can do to help them." Professor Henderson is also a research fellow with the Hoover Institution.

Directed donation as practiced by LifeSharers members is legal under federal law and under the laws of all 50 states and the District of Columbia. AOPO claims that because of LifeSharers' use of directed donation, precious time may be wasted and lives lost in allocating organs.

"If any time is wasted, it's not the fault of LifeSharers," says Dave Undis, Executive Director of LifeSharers. "LifeSharers had discussions last year with AOPO about streamlining the allocation process. AOPO dropped out of these discussions abruptly and without explanation. LifeSharers remains ready to work with AOPO, and we welcome the opportunity to do so."

LifeSharers adds just one phone call to the allocation process. This phone call could be eliminated if the national transplant waiting list was changed to show whether patients on the list are LifeSharers members. Alternatively, AOPO members could access online information about LifeSharers members who need organs.

There are currently 98,000 people on the national transplant waiting list, and more than half of them will die before they get a transplant. The organ shortage gets worse every year. Over 6,000 Americans die waiting for transplants every year, and another 2,000 are removed from the transplant waiting list because while waiting they became too sick to undergo transplant surgery. Americans bury or cremate 20,000 transplantable organs every year.

Everyone can join LifeSharers at 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. LifeSharers members receive an organ donor card, letters to share with family members and doctors, and language to attach to their durable power of attorney for healthcare. Professor Gerry Beyer of Texas Tech University School of Law, an expert in wills and estate planning, helped design these materials.

"It's disappointing that anyone at AOPO thought attacking registered organ donors was a good use of their time," adds Mr. Undis. "Every 90 minutes somebody in the United States dies waiting for an organ transplant, and every 30 minutes a transplantable organ is buried or cremated. AOPO resources would have been better used trying to convince more people to donate their organs, instead of criticizing people who have already agreed to donate. But haven't we all heard of the minister who criticizes his audience for poor turnout?"

ABOUT DIRECTED DONATION - IT IS LEGAL UNDER FEDERAL AND STATE LAW

LifeSharers members agree to donate their organs upon their death. They also agree to offer their organs first to other LifeSharers members, if any member is a suitable match, before offering them to non-members. This is accomplished through a process called directed donation, which is legal under federal and state law.

On the federal level, the 1999 "Final Rule" (42 CFR Part 121) governs the Organ Procurement and Transplantation Network, which is operated by the United Network for Organ Sharing. Section 121.8 deals with organ allocation. It includes the following language about directed donation: "Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation."

According to UNOS, "Directed donation is allowed by state law (although some restrictions may apply in certain states) and is a legal alternative to OPTN/UNOS allocation policy. As such, directed donation requests are honored as long as the recipient is available and medically suitable to receive the donation."

ABOUT LIFESHARERS

LifeSharers is a 501(c)(3) non-profit network of organ donors. Membership in LifeSharers is free and open to all. 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.

LifeSharers members include doctors, nurses, bioethicists, teachers, students, members of the clergy, and members of our armed forces.

About 10% of LifeSharers members are minor children enrolled by their parents.

Contact:
David J. Undis, 615/351-8622
daveundis@lifesharers.org

http://www.mydesert.com/apps/pbcs.dll/article?AID=/20071204/GETPUBLISHED/712040326

[Chris]

OK? So what if everyone joins Lifeshares, then what's next? We would be back in the same leaky boat. While I agree with having the right to donate to who you want, I do not see how  Lifeshares is helping if they keep accepting more and more people. You are basicaly still donating to someone you do not know as does the current system. So what is so special about Lifeshares?

[okarol]

I agree, I just have never understood the benefit of Lifesharers. If by chance you are fatally injured under just the right circumstances that would qualify you as an organ donor, then someone in your club gets the transplant before people waiting on the list?I guess they figure they wouldn't donate otherwise, if the can't designate who gets their organ, and thereby get credit for their loved ones to get a transplant. I don't know anyone who is a member so I haven't ever discussed it with a person who has made the decision to participate.

[Aldente]

I think the article raises some interesting question "How many people who could benefit from, or require, a transplant are willing to donate their organs to someone else?"  Should someone who is not willing to donate body parts upon their death receive a transplant before someone who is willing? 

I have spoken with people about organ donation and some look at you as if their organs would be ripped out of them not only while they were alive but while they were awake.  Another argument I hear is, "If I sign up to be an organ donor I won't get good care at a hospital.  They will let me die just to take my organs."  When you hear arguments like that, donating your organs to someone else who is willing to donate sounds like a good idea.

I think that the bottom line is that more people need to be informed about the benefits of organ donation and convinced that thy should make the commitment.

[KT0930]

I saw this article a couple of days ago and it got me curious about how other people (like my family here) who are waiting on a transplant feel about this group. Personally, I think they sound like a bunch of loons. They don't seem to take into account that UNOS makes the call who gets the organs that become available, not the person who dies. I don't want to sign up for this group, not because I don't want to donate, but because I want the person who is in the most dire medical need of them to get them (if they're viable). I can understand wanting your organs to go to someone whom you choose, but if you're that adamant about it, and they're waiting on a kidney or liver, go ahead and donate while you're alive!

So, as I said above, I'm curious what you all think of this group.

[Black]

I have mixed feelings about this group and will probably never join, but I can understand why they believe that if you are not willing to sign up to be an organ donor then you should not get priority when you need an organ.

[okarol]

 I want the person who is in the most dire medical need of them to get them (if they're viable).

While being given priority based on need is true for hearts and livers, when it comes to kidneys they don't always go to the neediest. It's based on wait time, (after tissue match) so some very sick kidney patients never get a chance for an organ. I hope they change it someday.

[KT0930]

Karol,

While I knew that wait time figures into the decision, I wasn't aware that it was such a huge factor that someone who needed it more might be passed over. You're absolutely right, that does need to be addressed! This still doesn't effect my opinion of the Lifeshares group, but opens my eyes a little more to the process. Thank you.

[okarol]

I agree with you on Lifesharers. I think we just need to improve UNOS instead!

[paddbear0000]

I have mixed feelings about this group and will probably never join, but I can understand why they believe that if you are not willing to sign up to be an organ donor then you should not get priority when you need an organ.

I wonder how they feel about those of us who can't donate our organs due to other issues? I guess we don't deserve priority either?

[okarol]

I have mixed feelings about this group and will probably never join, but I can understand why they believe that if you are not willing to sign up to be an organ donor then you should not get priority when you need an organ.

I wonder how they feel about those of us who can't donate our organs due to other issues? I guess we don't deserve priority either?

Yeah, good point. Guess you can't join the club! Crazy!