Court Rules Bone Marrow Donors Can Be Paid
NEAL CONAN, HOST:
Last week, the 9th Circuit Court of Appeals in California ruled it should be legal for many bone marrow donors to receive compensation. Up till now, bone marrows been treated like an organ, and getting paid for a kidney, say, is illegal under the 1984 National Organ Transplant Act. But because of a new less invasive procedure, the court ruled donating bone marrow is now more like giving blood plasma. The Justice Department opposed that argument and may appeal the decision to the Supreme Court.
We'd like to hear from you. Is this the start of a slippery slope? 800-989-8255. Email, firstname.lastname@example.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Carol Williams is legal affairs reporter for the Los Angeles Times and joins us now from her office. Nice to have you today.
CAROL WILLIAMS: Hi, Neal.
CONAN: And what exactly did the court do in this ruling?
WILLIAMS: Essentially, the court redefined the bone marrow stem cells that are extracted from a donor's bloodstream as blood parts instead of organ parts. So this takes it out from under the ban on sale of organs that the 1984 act of Congress instituted.
CONAN: We think of bone marrow donors as - it's a terrible operation with ugly needles that go in through the bone to the marrow. This is a much different procedure.
WILLIAMS: Yes. It used to be very painful and risky because the donor had to go under anesthesia in a surgical setting, and there was residual pain even after the anesthesia wore off because essentially the surgeons inserted a very large needle into the hip through the bone into the marrow and siphoned out the marrow cells directly from the bone. Now, the new procedure that's been developed over the last 20 years allows the donor to take some medication that stimulates the ejection of bone marrow stem cells from the marrow into the bloodstream. And then, the doctor or, you know, the clinic that is harvesting the marrow cells can just filter blood taken through an IV, like you would, you know, if you were getting some medication in a hospital.
CONAN: Now, a lot of us donate blood, drives at the office or various other places, but some of us also sell blood, so this would be treated like that?
WILLIAMS: Donation of bone marrow stem cells takes a little longer than a typical blood donation extraction, but it's pretty much the same discomfort level or, you know, lack thereof, in this case.
CONAN: So the big problem, as I understand it, with bone marrow donation is that there are relatively few donors. There's a very small universe of people willing to undergo the procedure.
WILLIAMS: Well, the real problem is that there are many more types of bone marrow than, say, blood. You know, there's only four types of blood, so it's not too difficult to find somebody who can make a donation that's suitable for somebody who needs a blood transfusion. With bone marrow, there are millions of different types, and it's particularly difficult to find a suitable match for people who have mixed race, you know, heritage because the properties that affect their genetic composition become much more diverse and complicated. And it's particularly difficult attempt to find suitable donors for people of mixed-race heritage when they need a transplant.
CONAN: And bone marrow transplants are needed for people who are undergoing cancer treatments.
WILLIAMS: Right. In leukemia victims and people who have genetic disorders. The lead plaintiff in the case that went before the 9th Circuit is a mother with three daughters who are going to need bone marrow transplants after their treatment for a rare genetic disorder, and she's thrilled that now there will be a much higher likelihood that suitable donors can be found when her daughters need this.
CONAN: Suitable donors, how much might one be paid for a donation according to the court?
WILLIAMS: There's a pilot project that's being promoted by a California nonprofit that would provide $3,000 scholarships or housing payments. It's a sum they have decided is enough inducement to get somebody to make the donation to a stranger. But not so much that it would foster the development of a black market.
CONAN: And so somebody would go in and make a donation not knowing to whom it would go. It would go to some central clearing facility of some sort?
WILLIAMS: Exactly. The donors and the recipients would not know about each other. So that's another, you know, hedge against any kind of, you know, extortion or, you know, black market pressures coming to bear on the operation.
CONAN: It also that if you donate a pint of blood and you - I assumed if you sell a pint of blood, you get cash on the barrelhead. If you donate bone marrow, I assume it would take some time before your marrow is matched up with a recipient.
WILLIAMS: Well, I think the monetary awards would only go to people who have been identified as appropriate donors for somebody who's in need of a transplant. There's testing they can do short of actually extracting the marrow that will tell the doctors whether this particular donor is the right one. And they're not going to give $3,000 grants to everybody who says they're willing to be tested and see if there's anybody who needs their particular type of bone marrow.
CONAN: And the government opposed this. How come? What was their argument?
WILLIAMS: Well, I think their concern is that redefining types of - parts of organs could be a slippery slope to, you know, allowing people to donate livers or kidneys or, you know, parts of their organs that can, you know, regenerate themselves. The definition that the - claimed Congress institutionally put on the bone marrow cells is organ hearts and that, you know, we shouldn't be trying to alter the intent of Congress in having an activist stand.
CONAN: There is a very elaborate and carefully set up system across the country to make sure that organs are provided to those on a waiting list on the basis of need. And this is a constant source - people die from lack of kidney transplants all the time, and other organs as well. Is there some concern that this could impinge on that system?
WILLIAMS: No. The proponents of this pilot project insist that it wouldn't change the priorities that are assigned to people who are looking for transplants. It would simply increase the donor base and allow for the saving of many more lives every year. They point out in an appeal they made to the Department of Justice today, asking that they not appeal the 9th Circuit's ruling that 6,000 people have died from lack of, you know, of suitable donation of bone marrow in the two years since they've filed their lawsuit.
CONAN: Let's see if we get some callers on the conversation. 800-989-8255. Email us: email@example.com. And we'll start with Matt, and Matt's with us from Lee in Indiana.
MATT: Yes. That's Leo, Indiana.
CONAN: I saw it. Goodness. My eyesight. I apologize.
MATT: That's quite all right. I became a Be The Match donor three years ago, before the - or before I was at least aware of the new process, when I was assuming that if I became a match, it would be painful. I'm pretty passionate about it. In fact, it is all I've asked for from family and friends for the last two years for Christmas is that they also sign up. And knowing now how much easier and less painful and less intrusive it is, it is, again, my single wish list for my Christmas stocking.
CONAN: Well, that's great. But how does that - how does the prospect of getting $3,000 credit of some sort - how does that suit with you?
MATT: Unconscionable. I can't imagine trying to - health care costs are so expensive. And when people are going through a blood cancer or a cancer situation where they need a marrow transplant, they're already going to be economically strapped beyond belief. And it just doesn't make sense to try to profit from their loss.
CONAN: Carol Williams, there are always concerns that the sale of organs and by extension, I guess, bone marrow, that it will be more available to the wealthy rather than to the poor.
WILLIAMS: Well, under the current system, the registry that's been in effect for decades, the recipients do not know who the donors are, and the donors don't know who the recipients are that they're being matched to. So they would have no way of knowing whether this was somebody who's impoverished or extremely wealthy or from, you know, whether further compensation could be, you know, extorted from them.
CONAN: And would somebody who's poor get help to pay the $3,000?
WILLIAMS: Well, it wouldn't come from the patients. It's coming from a nonprofit that has gathered donations on behalf of cancer victims. And their plan for the future should this become something that's, you know, compensated on a fairly regular basis, their hope is to enlist the insurance companies into providing some of the payments because this would be a great savings against the alternative, which would be to be doing transplants of less suitable matches which have all kinds of complications and require expensive follow up care. So, I mean, the hope and expectation is that, as you expand the pool of donors, you get better matches. And this brings down the cost of doing the actual transplants.
CONAN: Lee - Matt, thanks very much for the call.
MATT: Thank you.
CONAN: Email from Nicole(ph) in Baltimore. I remember being in college in an HBCU, and the pleas that would go for African-American students to donate. But the invasive aspects and the lack of motivation was a setback. I see this helping that market extensively in saving lives. I'm all for it.
This email from Vanessa. I've always wanted to donate bone marrow, but I was afraid of the process. I'm afraid of needles, and I always picture the old process with the very large needle. I think if they educate the public on the new process use, they would find many new volunteers. I think most people were afraid of the pain instead of looking for money.
And, Carol Williams, that leaves the question for the Justice Department. This was, as I understand, a unanimous vote by the 9th Circuit Court of Appeals. Is this going to be appealed to the Supreme Court?
WILLIAMS: The plaintiffs expected to be appealed just because they think the Department of Justice wants a definitive ruling on whether they can change the definition of bone marrow stem cells or if that somehow interfering with the intent of Congress that, you know, put a ban on sales of organ parts 27 years ago. So I don't know that the Department of Justice is appealing this or, you know, opposing the plaintiffs' objectives because they are against expanding the donor registry in saving more lives. I think it's more an effort to make sure that all the legal considerations are made and that, you know, they're not seen as advocating...
CONAN: But will this pilot program be going on in the meantime?
WILLIAMS: No. That would have to wait until the high court makes a ruling if it is - if the DOJ does petition the Supreme Court for writ of certiorari.
CONAN: Carol Williams, thanks very much for your time.
WILLIAMS: Thank you.
CONAN: Carol Williams is a legal affairs reporter for the Los Angeles Times. You can find a link to her article at our website. She joined us from her office at the paper. You're listening to TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.