Good News/Bad News on Compensating Bone Marrow Donors

by Greg Conko on December 7, 2011 · 3 comments

in Features, Health and Illness, Healthcare, Legal, Nanny State, Personal Liberty, Regulation

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By now, there’s been plenty of news highlighting last week’s decision by the Ninth Circuit Court of Appeals that the National Organ Transplant Act of 1984 (NOTA) does not forbid compensation for the majority of bone marrow donors. That’s great news for patients needing marrow transplants. And the non-profit Institute for Justice deserves a tremendous amount of applause for arguing the case. Unfortunately, the decision is far narrower in scope than it has been portrayed by some news outlets. And, although there is plenty here to celebrate, it neither “deregulates the bone marrow market” nor paves the way for compensating organ donation more broadly.

AEI’s Sally Satel had a good piece in yesterday’s Wall Street Journal discussing some of the nuances of the issue. Unfortunately, the headline on Dr. Satel’s op-ed misrepresents the nature of the ruling. (For the record, neither the author nor the primary editor of most newspaper articles has any control over the headlines.) So, here’s a bit more context.

Until recently, bone marrow donations could only be performed by having a large, thick, and very very painful needle pierced through your pelvic bone in order to suck out the liquid marrow. Today, however, the majority of marrow donations are not actually donations of marrow at all. Instead, peripheral blood stem cells are isolated from circulating blood, and those stem cells develop into bone marrow in the new patient. That means that most “marrow” donations can be as simple (more or less) as giving blood at your office’s annual blood drive. (It’s a slightly more extensive process than that. But you get the point.) That’s been a tremendous boon to patients needing marrow transplants, since the process is now far less invasive, less painful, and less risky in the majority of cases.

Unfortunately, as many as 3,000 people still die every year in the United States alone waiting for a marrow transplant because an appropriate match cannot be found. For years, lots of scholars, including us here at CEI, have suggested that it ought to be legal to pay prospective organ donors, particularly in cases where the donor faces minimal (though by no means zero) downside risk from the donation — such as with bone marrow and kidneys. That can’t happen now, though, because NOTA imposes criminal penalties of up to $50,000 and five years in prison for any person who “knowingly acquire[s], receive[s], or otherwise transfer[s] any human organ for valuable consideration for use in human transplantation.” And NOTA explicitly includes bone marrow on a list of prohibited organ sales.

Curiously, it is legal to pay for human blood, semen, and ova donations, which NOTA does not treat as  organs. The good folks at IJ developed a clever strategy and argued that peripheral blood stem cells are more analogous to donating blood than bone marrow. And the Ninth Circuit agreed. For purposes of the Act, the court concluded, peripheral blood stem cells should be considered blood parts, not organ parts. That means that it is now legal for approximately 70 percent of bone marrow donors to be paid for their life-saving contribution. Unfortunately, the judges were neither asked to, nor did they, rule on any other issue. Ultimately, the narrowness of the decision serves to reinforce the point that it remains unlawful to compensate “organ” donors.

Arguably, Sally Satel is right to suggest that: “the decision has broad implications for transplant policy in general because it underscores the profound weakness in our altruism-only transplant policy — not only relating to bone marrow, no matter how it is collected, but also for the thousands who die each year awaiting a kidney, liver, heart or lung.” Unfortunately, rational arguments for compensating organ donors have been around for quite some time. But there are still too many people who find it troubling, or unethical, or just plain icky to think that we should permit someone to sell his or her own organs. So, I fear that those of us who support compensating organ donors still have a very long road ahead of us no matter how well the market for blood stem cells actually functions.

Dave Undis December 8, 2011 at 8:41 am

As the death toll from the organ shortage mounts, public opinion will eventually support financial incentives for organ donation in the United States. Changes in public policy will then follow.

In the mean time, there is an already-legal way to put a big dent in the organ shortage — allocate donated organs first to people who have agreed to donate their own organs when they die. UNOS, which manages the national organ allocation system, has the power to make this simple policy change. No legislative action is required.

Americans who want to donate their organs to other registered organ donors don’t have to wait for UNOS to act. They can join LifeSharers, a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. 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.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. Non-donors should go to the back of the waiting list as long as there is a shortage of organs. Everyone can offer to donate their organs when they die, no matter what their medical condition or history is.

David J. Undis
Executive Director
LifeSharers

Ted Lawson December 8, 2011 at 11:22 am

By way of full disclosure, Sally Satel is a member of my board of directors. She was asked to be a member because of her valuable insight and research into organ and tissue donation. We completely agree with her about appropriate financial incentives to encourrage organ donation. Save Lives Now New York Foundation believes the current donation system in New York based on altruistic donation had unfortunately failed and needs immediate change. As Al Gore said when he sponsored NOTA, a system based on altruism might not work and then there would be a need for finan cial compensation. That time has come. Last year there wqere 28,662, transplants while 110,370 patients were on the waiting list in a “life and death” waiting game, so something different must clearly be done to deal with the organ shortage.

Ted Lawson, President & Executive Director - Save Lives Now New York Foundation December 12, 2011 at 12:32 pm

Ted Lawson, President & Executive Director – Save Lives Now New York Foundation comments on the use of financial incentives for organ donation:
The population of the United States will have to consider financial incentives for organ donation because there are not enough organs from deceased patients. Last year an estimated 13,000 patients died from brain death and only 8,000 families said yes to donation. Even if all 13,000 families said yes there would have only been 39,000 transplants (about 3 organs recovered per donor). The waiting list was 110,370 which means that even if all brain dead patients were to be donors, there would have been 70,000+ patients not getting a transplant. These patients are either on dialysis (renal patients) or they are dying. Therefore the medical community has to look to living donors for the needed organs.
Almost every living donor is doing so because a mother, father, brother, sister, son or daughter needs a transplant. That’s understandable – love of family motivates them. Last year these family members totaled 6,565. So where will we get the remaining 65,000 donors? There has to be an incentive to encourage strangers to donate. Why should they forego three or four weeks worth of pay checks and be out of pocket for their travel, food, lodging and miscellaneous unreimbursed expenses related to living donation?
Altruism hasn’t EVER covered the need for organ donation – since 1988 when OPTN/UNOS started collecting statistics on this. In the first year (1988) there were 5,000 patients who didn’t get a transplant because of a lack of organs available. In 2010 there were 81,000 who didn’t get on.
We ave to come up with some appropriate financial incentives to motivate living donors to come forward.

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