Transplant Smackdown – Organ Bureaucrats Attack Organ Donors

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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?”

AOPO TALKING POINTS AND LIFESHARERS RESPONSES

    AOPO talking point:

It’s not that people don’t want to donate. Research shows that nine out of 10 Americans support organ and tissue donation, but only 34 percent know how to make a legal commitment to do so. They can find out how by visiting www.donatelife.net.

    LifeSharers response:

According to a Donate Life America study from 2004, 91% of adults support organ and tissue donation but only 62% wish to donate any of their own organs or tissue.

The difference between what people say about organ donation and what they do about it is one of the basic premises motivating LifeSharers. Just about everyone says he or she supports organ donation, yet most people never sign up. LifeSharers provides an incentive to get people who already support donation to back up their principles with action. LifeSharers also provides an incentive to get people who don’t support organ donation to change their mind. The incentive LifeSharers offers is a powerful one: if you agree to donate your organs after you’re dead, you’ll increase your chances of getting an organ if you ever need a transplant to live.

Signing up to be an organ donor has never been easier. LifeSharers is making it even easier by giving people another option.

    AOPO talking point:

More than 50 million Americans have signed up as donors through their state donor registries. Clearly, millions of people are willing to sign up as organ donors out of compassion without any expectation of to whom their organs should be allocated.

    LifeSharers response:

It’s a blessing that there are 50 million Americans who are willing donate without thought of what is in it for them or who receives their organs. If there were enough of these people, there would be no need for LifeSharers. LifeSharers helps encourage organ donations from everyone who lacks such compassion.

If compassion and altruism could eliminate the organ shortage, the shortage wouldn’t exist in the first place. Instead, 50% of the organs that could be transplanted from deceased potential organ donors are buried or cremated instead.

Agreeing to donate your organs when you die is a wonderful thing. Donating your organs to other organ donors is even more wonderful, because it creates an incentive for non-donors to donate.

    AOPO talking point:

LifeSharers has yet to facilitate a single transplant, while each year more than 20,000 lives are saved through the established organ allocation process.

    LifeSharers response:

It’s true that no LifeSharers member has yet received a transplant from another member. But it’s just a matter of time. LifeSharers doubled its membership last year, and now has over 10,000 members. As our membership grows, registered organ donors will get more organs and non-donors will get fewer organs. This will make it even more likely that non-donors will sign up to donate.

It’s wonderful that 20,000 organs are transplanted every year under the established organ allocation process. But another 20,000 transplantable organs are buried or cremated every year. Most of those organs would be donated instead if the national allocation system adopted the LifeSharers approach and put registered organ donors first.

    AOPO talking point:

LifeSharers has no formal role in the national system of organ allocation. Precious time may be wasted and lives lost if donor families have to name recipients they don’t know.

    LifeSharers response:

LifeSharers adds just one phone call to the allocation process. It would be easy to eliminate the need for this phone call. In 2006, LifeSharers had discussions with AOPO about streamlining the allocation process. AOPO dropped out of these discussions without explanation. If time is wasted and lives are lost, it is not the fault of LifeSharers. LifeSharers remains ready to work with AOPO, and we welcome the opportunity to do so.

The best way to streamline the allocation process while respecting the rights of organ donors is to incorporate the LifeSharers system into the national organ allocation system. This would be very simple, involving the addition of one piece of information for each patient in the waiting list database. As an alternative, LifeSharers is willing to give AOPO members online access to information about members who need transplants.

    AOPO talking point:

Fairness is fundamental to an ethical organ allocation system. Penalizing people facing dire illness simply because of their personal beliefs about organ donation does not seem fair. What comes next: organ donor clubs that donate only to people of the same race?

    LifeSharers response:

Fairness is indeed fundamental to an ethical organ allocation system, but the national organ allocation system is unfair. It lets registered organ donors suffer and die while it allocates about 50% of all donated organs to people who have not agreed to donate their own organs when they die. It treats registered organ donors no better than it treats people who refuse to share the gift of live.

LifeSharers does not penalize anyone. It rewards people for their generosity, and that reward is available to everyone. Everyone can join LifeSharers, and there is no cost to join.

The best way to help people facing dire illness due to organ failure is to increase the supply of transplantable organs. That’s what LifeSharers is trying to do.

AOPO insults LifeSharers members with its offensive use of the race card. Every LifeSharers member has agreed to share the gift of life. Instead of attacking registered organ donors, AOPO should focus its attention on those who would rather throw away their organs than save their neighbors’ lives.

    AOPO talking point:

There is no magic bullet for solving the shortage of donated organs. But we can save as many lives as possible by signing up on our state donor registries.

    LifeSharers response:

The LifeSharers approach has the potential to save thousands of lives every year in addition to the lives saved under the current system. If the national organ allocation system put non-donors at the back of the waiting list, just about everyone would sign up to be an organ donor.

    AOPO talking point:

The organ allocation system is fair. No one is allowed to jump to the front of the waiting list. Organs are allocated solely according to medical criteria, not personal beliefs.

    LifeSharers response:

The organ allocation system is not fair to registered organ donors, and it lets people who refuse to donate their own organs jump to the front of the waiting list if they’re sick enough.

It’s not true that organs are allocated solely according to medical criteria. Many non-medical criteria play a part in determining who gets the next organ, including ability to pay, location, age, and time spent on the waiting list. It’s also fairly common for relatives, friends, and neighbors to receive organs from deceased donors through a process called directed donation. This is the process LifeSharers members use to offer their organs first to other members.

    AOPO talking point:

We are concerned that the promotion of a process that operates outside the organ allocation system may cause people to doubt the effectiveness of state donor registries or the fairness of the process.

    LifeSharers response:

It would be very easy for AOPO to back up its concern by helping incorporate the LifeSharers approach into the national organ allocation system. This would respect the legal rights of organ donors and save thousands of lives every year.

People have good reason to doubt the effectiveness of state donor registries. Under the system that AOPO favors, there are 98,000 people on the national transplant waiting list. Most of them will die without getting a transplant.

AOPO has good reason to worry about whether people doubt the fairness of the organ donation process. A 2005 Coalition on Donation survey found that 80% of respondents question the fairness of the organ allocation system. Fewer people would think the organ allocation system was unfair if the system put registered organ donors first. A 2005 survey reported in Clinical Transplantation found that 53% percent of the respondents believed that people who have previously agreed to donate their organs after death should be granted priority to receive cadaveric organ transplants over those who have not agreed to donate.

    AOPO talking point:

LifeSharers asserts that receiving a transplant without being a registered donor is like winning the lottery without buying a ticket. This isn’t a game; this is life and death. And consistent with U.S. transplant system, only medical factors should determine who does and does not receive an organ from a deceased donor.

    LifeSharers response:

Organ transplants are indeed about life and death. Why do over 6,000 people in the United States die every year waiting for transplants? It’s because their neighbors bury or cremate 20,000 transplantable organs every year. These life-saving organs wouldn’t be wasted if the U.S. transplant system put registered organ donors first. AOPO defends a system that lets people get organs even if they refuse to give.

Medical factors are not the only factors that determines who gets organs today. Ability to pay, location, age, and time spent on the waiting list also play a role. Directed donations, which are not based on medical factors, are also fairly common. By arguing that only medical factors should matter, AOPO implies that directed donation should be banned. This would prevent Americans from donating their organs to family members, friends, and neighbors. Fewer Americans would donate if directed donation was banned, and more people would die waiting for transplants.

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

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