A federal law banning compensation for organ transplants doesn’t extend to bone marrow harvested from a donor’s blood, a federal appeals court said Thursday in a ruling that could attract thousands of new donors in a national campaign to save the lives of those afflicted with cancer and genetic disorders.
In the last 20 years, though, medical advances have brought about a less intrusive method by which the life-saving marrow stem cells are harvested from a donor’s bloodstream in much the same way as blood is drawn at a blood bank. The new process, known as apheresis, filters out excess marrow stem cells that circulate in the bloodstream, as opposed to the surgical extraction method, known as aspiration, which inserts a large needle into the hip bone and siphons out the cells.
MoreMarrowDonors.org wanted the organ transplant law struck down or amended to allow the nonprofit to offer $3,000 scholarships or housing payments to attract new registrants to the National Marrow Donor Program. The registry has more than 7 million members, but many joined years ago during donor drives for friends or family members and are often reluctant to donate to a stranger.
About ten years ago, I was a bone marrow stem cell donor. My sister had lymphoma, nothing was working, and she was dying. She’s completely recovered, which is amazing and wonderful.
Her siblings had blood drawn for the match test. I was the best match. I have a younger sister who was also tested, and she is a great but extremely competitive person. She left a message on my answering machine after we got our results where she said, clearly pissed, “you won”, which was the only thing I heard that summer that made me laugh. She was a cheerleader in high school, so that explains a lot, I think.
The donor stem cell production and collection process was way more complicated and time consuming than it is now, apparently, following the links in the story. The donor’s role is odd, in a hospital setting, which is where most of this was conducted in my case. The donor is a patient, sort of, but not really THE patient. The donor is somewhere between a visitor and a patient, or that’s how it felt to me, because the donor isn’t really the focus of all this extraordinary effort. It’s a passive role.
I had trouble with this in-between status only on the day of the actual collection. I had agreed to provide marrow stem cells for my sister along with “extra” (medical term) for the research team, as a condition of her taking part in what I came to understand was some sort of study or trial.
My approach to the health care system is to arrive and immediately tell them when I’m planning on leaving: “you have six hours, tops, and then I’m climbing out the window when you turn your back” is the implied threat. I had been reminding them since we started that I had to be out of there and done on the day “we” (I) had all “agreed” (I invented out of thin air). On collection day there was idle chatter among the nurses that I might have to stick around longer to produce more cells. I said something like “we’re all staying right here, this day, until we get enough”, because I had been almost an observer for weeks and I was just tired of that.
The thing is, that was an idle threat. I was going to stay until they collected enough. I made the decision to go all the way with it way back when I was tested, not when I was matched, and I agreed to test without thinking through any practical concerns, really.
Now, I was donating to my sister, not a stranger, and she was dying, so it wasn’t abstract or remote, it was an emergency. Too, I had support. I was working for the Postal Service at the time, had good health insurance, so I was covered on that end if I needed it. I had paid sick time and vacation time. I had (and have) a husband who was and is perfectly capable of and willing to taking care of my end of things when I can’t. Maybe because those practical concerns were, in fact, taken care of, I had the freedom to decide immediately and commit to the whole process when I agreed to have blood drawn for the first test. Maybe three thousand dollars would matter a lot to another donor who has fewer resources, and is therefore less likely to join a registry because they don’t have the means or assistance I had.
All the other ethical considerations aside – and by all means discuss those if you care to, I’d be interested in that- do you think this will work?
WereBear
Why not? Times are tough.
I’d risk a lot for a sibling… but it would be tougher to do for a stranger; I think that’s just human nature.
If $3k saves someone’s life; well, that’s cheap, isn’t it?
TooManyJens
It’s my understanding that it’s harder to find matches for non-white patients in the U.S. Given our income/wealth distribution patterns in this country, the matching donors for those patients are more likely to be in financial situations where $3000 would make a huge, even life-changing, difference. So that’s something to consider. It might really improve the odds for nonwhite patients.
And if it’s not harmful to the donor, I don’t have any first-order ethical problems with it. You could get into a whole debate about whether ultimately it’s corrosive to society to give financial inducements for donations like this rather than people giving them out of generosity, but a) I don’t know that I believe that; b) not everyone can afford to be generous in this way, as Kay pointed out; and c) it’s hard to make the case that an abstract, unknowable concern like that should take precedence over saving real lives in the here and now.
wrb
For $3k per donation they’ll be offered so much marrow that Wall Street dining rooms will be serving it on toast points.
Villago Delenda Est
Seriously, if the new method is drastically less invasive, I don’t see a problem here, if it encourages donations.
It’s not like Monty Burns is buying your kidney.
kay
@TooManyJens:
I don’t know that it would. It’s a process, and it involves medication to stimulate stem cell production prior to collection. I think many people can’t even take time off work (with pay) or travel far. I think 3 grand covers their costs, maybe.
Belafon (formerly anonevent)
The point of the federal ban is to prevent people from selling things that cannot be reproduced, thereby permanently reducing their long-term health. Lots of poor people would sell organs for short term gain.
Bone marrow, on the other hand, regrows, so I don’t see this as nearly the problem. I could definitely see some need to regulate how often it can be given.
Punchy
But what does Sullivan think about bone marrow?
kay
@TooManyJens:
I don’t want to make it sound incredibly difficult, because it wasn’t then and it’s much less so now, but it’s not getting your teeth cleaned either.
Child care, travel costs, time off work, etc.
TooManyJens
@kay: OK, that makes sense.
mistermix
The thing that gives me pause is having to take drugs to stimulate cell production. Other than that, since it’s replaceable, maybe it’s OK. There’s paid blood donation, and that’s arguably slightly life affecting. There’s a huge market for sperm donation, with a lot of morally ugly stuff going on with how donors are chosen, too.
kay
@Belafon (formerly anonevent):
Right, that, and we allow compensation for plasma, so there’s that. That’s the comparison the court made.
But are bone marrow and blood the only collected “organs” that regrow?
kay
@TooManyJens:
The plaintiff made the “cover cost” argument. I don’t know that they would have brought the “they need the money” argument, because that’s just fraught with the potential for abuse.
On the other hand, CATO is in favor, so we should be careful :)
pete
Thanks for bringing this up, Kay. There is potential for exploitation, but there is also a need for donors. Specifically, the apheresis procedure is still somewhat experimental, with some known and other possible risks, largely related to the drugs the donors take. (To avoid multiple links, I’ll blog-whore: I wrote about it, with links that I recommend following, here.) We need to have this discussion because if regenerative medicine ever really gets going there is going to be a lot more blurring of the lines between selling organs and donating tissue. Better start thinking about the implications now.
Poopyman
By coincidence, I’ve just come back from an apheresis donation at the local Red Cross. The usual apheresis procedure is to harvest platelets for chemo patients and others who cannot produce them on their own.
During apheresis a line is inserted in the vein of one arm, which draws blood from the body into the apheresis machine, which is basically a centrifuge which separates the red blood cells from the platelets from the plasma. The platelets and some plasma is collected and the red cells recombined with the remaining plasma and a saline solution and reintroduced to the donor through the other arm. The whole procedure lasts (depending on donor and amount harvested) from one to 2.5 hours, give or take. Donors are set up in a (very!) comfy recliner, well blanketed and with a DVD of their choice in front of them. For obvious reasons a donor can’t move their arms at all for the duration of the donation, so their can be a bit of anxiety for newbies. It’s not for everyone.
Now, when the machine is set up, a “kit” is placed on it which is a disposable system of sterile tubes, pouches, and needles, which is the only thing your blood ever contacts. Obviously patient safety is of paramount concern for the Red Cross, or else their entire donor base would flee. These kits cost somewhere north of $150, and the apheresis machines have to run into the many tens of thousands of dollars.
So, my point, beyond giving a basic outline of what apheresis is, is to point out that harvesting blood products safely in everyday operation is a pricey proposition, from the collection overhead to the recipient’s hospital (who I’m sure takes their cut). I don’t know how much a recipient pays for platelets, but it won’t be cheap.
So the “compensation” referred to here almost surely refers to the outsourced collection agencies who provide blood products, rather than money going directly into donors’ pockets. As a donor I don’t receive compensation, and I wouldn’t even think of taking any.
(In the interest of full disclosure, I DO take the occasional ARC tee shirt.)
Holy crap! This is long. Sorry.
chopper
@Punchy:
something about bone marrow from blacks not being as high quality as that from whites. it’s science.
Yutsano
Any time you have a financial inducement you run the risk of abuse of the system. At the same time, they compensate sperm and blood donors, so this would fit into that category. The process is a bit more intrusive however, so that relative compensation level seems about right.
Warren Terra
Without really registering an explicit opinion on whether people should be allowed to hold out for money when choosing to undergo some pain to save a person’s life, I’d like to note that if you’re reasonably healthy and you’re not in the bone marrow registry, you’ve got little excuse. It’s not hard to find a way to give them a sample for genotyping at no cost to you, and some day there might be someone who is not as lucky as Kay’s sister to have a matching and willing relative, and you could be their difference between life and death. It’s only a little harder than signing your organ donor card, and unlike that card there’s a chance you’ll be able to help someone inthis way while you’re alive.
In addition to giving DNA, you can also give money; the genotyping isn’t cheap, even though they typically don’t charge the registrants, who are already volunteering to potentially get stabbed with a huge needle. They make up the difference through donations.
Find out more at the bone marrow registry’s website.
pete
@Poopyman: Good description. Note that for marrow/stem-cell donations, the drugs I referred to above are to increase the amount of the relevant cells that stray into the blood. Sort of like taking hormones to stimulate egg production.
kay
@Poopyman:
Right, but this is different. The money does go directly to the donor:
kay
@pete:
That’s what I understood, because I signed release after release after release when I arrived.
I knew the process wasn’t risky. It was clear that the stimulative drug was what they were concerned about.
cathyx
I have no problem with this. Like others have said, it’s not the same as donating an organ that can not be reproduced. And if giving someone $3000 is what it takes to get them to donate, that’s alright.
Also, too, I have no problem with certain briberies like paying my daughter for good grades. It works.
Poopyman
@pete: And I see that in the linked article:
So they are referring all the way back to the donor. Interesting.
nancydarling
@Poopyman: Good for you! My son has been a blood donor since his freshman year in college. His goal is to donate 4X per year—I think you can donate every 2 months. If he has averaged at least 3X per year for 14 years, I calculate more than 5 gallons. I have read research that it is actually healthy for men and post-menopausal women to donate blood regularly. Alas, my hematocrit always comes up one or two points too low except for one time when I made the cut. My son is donating my share I guess.
Another plus is that it has kept him from getting a tattoo. Not that there is anything wrong with tattoos.
catclub
@kay: Livers regrow!
kay
@catclub:
Do they? I didn’t know. I’m not looking it up, either.
catclub
But the surgery to remove the lobe of a liver is life threatening. (Just read “Cutting for Stone”)
Belafon (formerly anonevent)
@kay: Skin, blood, marrow, and your liver will regrow if you have more than half of it. As far as I know, nothing else.
pete
@Poopyman: The drugs basically make the marrow-based material available to the bloodstream, or more available, so it’s almost a two-step extraction scheme. I find that conceptually interesting, and I think it’s the basis of some legal objections. It’s definitely a gray area, and one of the issues is whether the FDA/NIH (I’m unclear which) can and should make clarifying rulings.
But as of now, compensation for this procedure is legal in at least one circuit, though a parallel court of appeals could rule the other way and confuse everything unless the Supreme Court makes a ruling. Several of these biology-related issues are at or heading toward the Supremes, and we can only hope they learn some (cough) empathy.
catclub
@nancydarling: A piker, ( but good on him) in the old days it was as often as once every 7 weeks, so 8 donations possible in a year. [Jan 1 and dec 31]
I take my iron pills to get hematocrit up, then give again.
The age thing means that is not as fast as it used to be.
As to the thing about it being no harm to the donor so I guess it is okay. “Man was not made to suffer, but in order for this man to not suffer, some one else will probably have to sacrifice.” It is a conundrum, but I do not see a reason to only provide donations that require no actual sacrifice.
low-tech cyclist
@kay: I don’t know that it would. It’s a process, and it involves medication to stimulate stem cell production prior to collection. I think many people can’t even take time off work (with pay) or travel far. I think 3 grand covers their costs, maybe.
An awful lot of people right now don’t have regular jobs to take time off from. Let’s say you’re a decent hike from the marrow collection center, so this involves 500 miles of travel, 30 hours away from home, and you have small kids. Between gas and babysitters, you probably spend $400. That leaves you $2600 ahead, and that’s a big help if you’re unemployed.
catclub
@Belafon (formerly anonevent): Nothing else? How about hair?
I wonder about bone. I suspect bones do heal, so you could extract a longitudinal section of bone, and it might replace itself.
schrodinger's cat
@Punchy: If it gives him high he is for it, also if he can see it outside his window or your window for that matter.
Poopyman
@nancydarling: @catclub: Fifty-six days for whole blood, but it’s only 14 days for platelets. Of course, I don’t think every whole blood donor can give platelets, although I don’t know what criteria the ARC uses beyond a high-enough platelet count.
kay
@low-tech cyclist:
Okay, but it’s more than collecting the marrow (blood). They have to take a series of drugs, over days, to stimulate production. At the time I was there, these were injections, so that’s a visit somewhere.
It’s not a one day process. Again, I don’t want to discourage people from donating, but it’s two steps, over days.
Steve
This lawsuit is kind of the camel’s nose under the tent, with the ultimate goal being the libertarian fantasy of legalizing organ selling. While I think that would mostly be monstrous, I’m not a big fan of slippery slope arguments and I don’t really see a problem with people selling renewable substances like blood or bone marrow.
kay
@low-tech cyclist:
I think they kept the payment deliberately low so it wouldn’t be perceived as “for profit”, actually.
The stated rationale is not profit. It’s covering costs. A “scholarship”, not a payment.
rageahol
If you need drugs to stimulate production of the cells, then there is a real possibility of inducing cancer. more growth means more cell divisions, which in turns means more chances for mutations to turn bad, in stem cells, which is where i think there is a fairly good consensus that cancer really starts.
so while i agree that nonwhite folks need more donors, it seems like a better way to address that is to get them greater access to medical care, and not do shit like the Tuskeegee experiment or various permutations thereof. you know, the hard stuff.
offering money is easy. addressing actual inequalities and disparities is hard, and we should be skeptical of any easy “solution”, in whole or part, to hard problems.
BonnyAnne
kay, I work with heart and lung transplant patients, and so any sort of transplant that doesn’t involve legally-dead patients always seems like a wonderful sort of thing. How great to be able to thank your donor! It’s a happy and sad day for transplant recipients, when they get the phone call and come in for surgery; they’re getting a chance at a new life, but they know that someone else had to die to make it happen.
I’m not surprised that the judges ruled this way; I’m more surprised at how long it took to allow remuneration. It has always seemed to me that donating bone marrow is very similar to donating eggs, and in some ways even less permanent. After all, bone marrow grows back, but the eggs are gone forever. And given how strange the market for egg donation can be (“Must be blonde with a Jewish father and Filipino mother, studying chemistry, and an active jogger”), why not offer up what is effectively a potential bribe to people who might not otherwise register?
(Disclosure: I actually looked into selling eggs back in college, to pay for school, but my SAT scores were too low.)
dave
So, help save a life and donate $3000 to a local food shelf / homeless center. A double dose of good!
Teacherboy
@wrb: So good comments by all, but this is the comment that I’m going to be laughing about for the rest of the day.
low-tech cyclist
@kay: Okay, but it’s more than collecting the marrow (blood). They have to take a series of drugs, over days, to stimulate production. At the time I was there, these were injections, so that’s a visit somewhere.
It’s not a one day process. Again, I don’t want to discourage people from donating, but it’s two steps, over days.
I know, I read that part. So suppose the place is 50 miles away, and you’ve got to make 5 round trips. There’s the 500 miles I allotted for, and 10 hours of travel time. And let’s say you need to spend 20 hours at the facility, between advance prep and the marrow donation itself. There’s your 30 hours. So say 30 hours @ $10/hour for the babysitter, that’s $300, plus $70 for 20 gallons of gas.
I note that the piece you quoted said “$3,000 scholarships or housing payments” and $3000 in housing payments frees up money for an unemployed person to buy food or clothes, make the car payment, whatever.
kay
@low-tech cyclist:
It’s fine, I think it’s subject to interpretation, but I thought “housing payments” meant “where you would stay while you were doing this”.
So you wouldn’t have to go back and forth.
I think we do have a basic disagreement, though. I’m not thrilled at this as a last resort for people who are unemployed. I don’t think it’s the same as giving blood, because donors undergo a medication regime.
I didn’t interpret it as a payment. I interpreted it as covering costs. I like it even less as a way for desperate unemployed people to survive.
wrb
@BonnyAnne:
Raising chickens really isn’t all that hard.
kay
@low-tech cyclist:
Just to be clear, I think if the plaintiffs had made that argument, the plaintiffs might have lost. I think there is potential for abuse with that argument, because there’s an element of risk that isn’t there with a blood donation. I don’t think you’ll be hearing the “unemployed people/survival option” bandied about :)
MinnMary
I’ve lurked here for a couple of years, but never commented. But on this issue, I need to provide some info. I work for the National Marrow Donor Program (NMDP) in Minneapolis as a communications specialist. I’m not a medical person, but I am familiar with the issues around this ruling.
First, Kay, thank you for joining the registry and donating to your sister! The USPS has partnered with NMDP for years and has added 50,000 people to the registry through its support — several USPS employees have gone on to donate marrow to a patient and save lives.
The 9th circuit ruling is puzzling on two levels. First, it says that marrow donated through aspiration — when it is extracted from the hip bone — counts as an organ donation and therefore a donor cannot be compensated for it. But when marrow is donated via peripheral blood stem cells (PBSC) — the way Kay donated — it is NOT an organ and can be compensated. It’s a bit difficult to make sense of that. Here’s the ethical rub. When a patient needs a transplant, the physician determines which method is best for the patient. If a donor can be compensated for one donation method but not the other, will this influence physician’s decision? Or will a matched donor refuse to donate unless the PBSC method is used, thereby putting the patient’s life in jeopardy?
Second, where is the money coming from to pay these donors? At a time when we’re trying to get the money OUT of our health care system, what is the end game here? Currently, the patient’s insurance covers most costs to the donor (transportation, child care, etc.). Many states are passing legislation that requires employers to provide paid time off for an employee to donate marrow (which I personally think is a great way to approach this issue). I think it’s also important to understand that donating marrow is not like donating blood or plasma – it’s not a way to earn some extra money. The donation only takes place after extensive testing is done to determine whether the donor is the very best match for a patient, which is time consuming and expensive. (Joining the registry, on the other hand, is easy and not time consuming… but joining and donating marrow are two very different things.)
Too often, out of a registry of more than 9 million people, there may be only ONE match — ONE chance for that patient’s life to be saved. Donating marrow to a complete stranger is one of the most awesome, big-hearted things I’ve ever seen… and we’ve seen it 50,000 times since the NMDP was founded 25 years ago. People ARE willing to do this without compensation. Please go to BeTheMatch.org to learn more about the 9th Circuit’s ruling and the work we do to help save lives.
kay
@MinnMary:
Thanks so much for the comment, it’s really informative, but I have to tell you, I’m not on the registry (that I am aware of ) although I signed many, many papers, so maybe I am :)
Honestly I didn’t even consider the whole registry thing until I read this opinion.
Egilsson
@Poopyman:
Hey Poopyman, as someone who received a lot of plasmapheresis treatments at one time, thanks dude! I’m sure it made a huge difference in my recovery from one of those rare and weird neurological diseases. I couldn’t even feed myself at one point.
My understanding is that it takes a lot of people donating to provide a single treatment.
I wish they would let me donate blood, marrow, etc, but I can’t.
Steve
@MinnMary: I don’t understand something you wrote. Are you saying that depending on the needs of the transplant recipient, it makes a difference how the marrow is extracted from the donor? I don’t really get that but I don’t know much about any of this. By the way, I signed up with your registry so you got at least one new member by making this post here today. Best regards.
PhoenixRising
@MinnMary:
Respectfully, no. The mix of patients who are waiting for a donation, measured by their racial type, vs the people who ARE willing to donate marrow without compensation, does not match.
If you’re mixed race, or a member of a couple of minority groups (American Indian, South Asian, black) and need a transplant, you’re going to die unless a bio family member is a match and willing. And more to the point, any BJ reader who meets those specs and isn’t in a registry, get in there. You could save a life.
So yeah, “people” are willing to do it as a gesture of goodwill toward humanity. Just not all the “people” who would be needed to create a process that doesn’t discriminate based on “people” having the unstated modifying “white”.
As an aside, I think there’s a 14th Amendment argument that prohibiting compensation for a blood donation with a disparate impact on certain sick people is not just wrong, but also against the law. Would the Roberts Court look at that, of course not, but I’d love to see Kenji Yoshino make that oral argument.
FedSec
I got booted off the national registry because, between the time I signed up and the last time I got called up as a potential match, I had developed rheumatoid arthritis. I was told the process would involve boosting the body’s immune system and, with RA, that is a no-no. Now I will have to check if this new system of marrow collection will allow me back onto the registry.
Steve
@PhoenixRising: A ban on pot may have a disparate impact on Native Americans who use peyote in their rituals, but it’s still not a 14th Amendment violation as long as the law is written neutrally and there’s no discriminatory intent. Virtually every law burdens some race, gender or other classification more than it burdens others. Your better argument, I think, would be a “medical self-defense” argument that says if you need a transplant to save your life, the government can’t stop you from buying the thing you need. It’s a novel argument but at least it’s not foreclosed by precedent.
Bago
Uhm, it hurts less because you are having fewer needles being stabbed through your bones? Seems like it could be a sales pitch.
Kevin
@Steve:
Hi Steve,
There are several different factors that go into which product is selected. Age, disease progression, type of transplant etc. For example, I think PBSC has poorer outcomes in children than adults. The donor doesn’t get to decide if they do PBSC or Marrow. That decision is made by the doctor.
Hope that helps.
Kevin
MinnMary
@PhoenixRising — I understand the race issue and how it affects the likelihood of finding a match for a successful transplant. People who share a racial or ethnic heritage are more likely to match one another (that said, race/ethnicity does not always play a role). However, despite ongoing efforts, African Americans, Hispanic/Latino, Asian, Pacific Islanders, Native Americans and other groups are under-represented on the registry. Our recruitment efforts focus heavily on getting members from these groups to join to help equalize the likelihood of a match. But please don’t think that simply because someone is Asian, African American or any other race/ethnicity that they automatically are doomed. It’s not so. The key is growing the number of registry members from those communities to give ALL patients who are waiting more hope.
@Steve: Thanks for joining!! Yes, you have it right. The physician determines, based on the patient’s diagnosis, condition, prognosis, etc. whether marrow taken from a donor’s hip bone (under anesthesia) or marrow taken from the bloodstream is the best option. It’s all about what will give the patient the best chance for a cure.
Also, if anyone reading is a parent-to-be, consider donating your baby’s umbilical cord blood to a public cord blood bank. It doesn’t alter the birth experience at all, is safe for the mom and the baby, and research is discovering that cord blood cells can potentially save more lives because they don’t have to match as closely as cells from an adult donor. In the coming years, this will be key to helping resolve the racial/ethnic disparity RisingPhoenix noted above.
WaterGirl
Kay, I just have to say wow. And I thought I was a pretty good sister. I am left nearly speechless at the thought of your gift to your sister.
Iain Mars
I think it’s a great idea. Time’s are certainly tough and offering people a financial incentive to donate will definitely get people enlisting themselves to donate bone marrow.
I’m on the British Bone Marrow Register and have been for over 10 years. I would happily donate to anyone, anywhen and not ask for anything in return. However, I completely understand that with a financial reward there will be more donors and a better chance of finding a match.
Ideally, people should be prepared to just donate for free but I guess it’s quite a bit thing to ask for!