By Ami Schmitz and Stacey Naggiar
Rock Center
Doreen Flynn is the mother of three young girls with an incurable blood disorder called Fanconi anemia. Jordan, 13, and twins Jorja and Julia, 7, will all need bone marrow transplants to survive. Their mother fears there won’t be a match for her girls when the time comes. Or worse, that if a match is found that the donor won’t follow through and donate. She has reason to worry - some experts say that nearly half of donors don’t follow through with donation. So she has become the lead plaintiff in a case that she hopes will change medical history and make it legal to pay bone marrow donors. In doing so, she’s also taking aim at a long held position by the medical establishment that people who provide bone marrow should be altruistic – and not in it for the money.
Jeff Rowes with the Institute for Justice is Doreen Flynn’s lawyer.
“Bone marrow is just like anything else in the world... it’s valuable. And if you compensate people for it, you’re going to get more of it, it’s just that simple,” Rowes told Dr. Nancy Snyderman.
According to the National Marrow Donor Program, the best matches are from related siblings and only 30 percent of those searching will find a match in an immediate family member. The rest must rely on the altruism of a stranger.
IT’S VALUABLE
The National Organ Transplant Act in 1984 made it illegal to buy and sell organs and organ parts. But according to Rowes, including bone marrow in that law was an oversight. So he is suing the federal government on behalf of Doreen Flynn and other plaintiffs, who argue that treating bone marrow like organs violates the Equal Protection Clause of the Constitution. Rowes says the case is about “people being able to make medical decisions for themselves to find out what is the best way to do things without being threatened with five years in federal prison.”
His main argument: bone marrow, unlike organs, regenerates within a matter of weeks.
Furthermore, it’s easier to donate bone marrow than it was when the law was enacted. Traditional bone marrow donations, in which a needle is inserted into a patient’s hip bone to extract marrow, is now done less than 25 percent of the time. The simpler and more common way to donate, called apheresis, collects peripheral blood stem cells circulating in the blood stream. Prior to donation, prospective donors take a medication that stimulates production of the marrow cells and then a machine does the rest of the work. The blood draw usually takes just a few hours.
THE LONE RANGER
Dr. John Wagner of the University of Minnesota is a renowned expert in bone marrow transplantation and blood disorders and one of the few doctors who agrees with Doreen Flynn.
According to Wagner, there are many reasons why matched donors don’t show up.
"It could be in some cases, that the donor is on vacation, or the donor’s work does not allow them to take off from work. Or it may be that they never really wanted to be a donor at all,” he said.
Wagner calls these situations “destructive and devastating to the trust in the system.” He explained the agony that families go through when they have to start a search over again. He believes that offering compensation could be a solution.
Wagner says “there are a number of people that quietly sit by the sides in agreement” but aren’t willing to come forward because the issue of compensating bone marrow donors is so controversial.
“I like to push the system to see if we could somehow make a dent into it. That somehow, it might make a difference where other things have not so far,” Wagner said.
AGAINST COMPENSATION
The National Marrow Donor Program is the world's largest bone marrow registry and opposes compensation for bone marrow donors. The registry - called Be The Match - provides access to approximately 17 million people willing to donate worldwide.
Michael Boo is the NMDP’s chief strategy officer. He worries that compensation could create the potential for an unsafe donation because compensated donors may not disclose their health or behavioral history. He says that’s not a problem with volunteer donors currently on the registry.
“We think that they’re telling the truth because they have an altruistic motive, there is no financial incentive to lie to us,” Boo said.
He also insists that compensating donors in the United States would isolate the nation from donors in the rest of the world.
“If the NMDP were to follow this practice of compensation, then we would not have access to the additional eight and a half million donors that are available worldwide, nor would those patients in those countries have access to the U.S. donors,” Boo told Dr. Snyderman.
Joan Chelsen’s brother, Roy, was a 9-11 firefighter, diagnosed with a blood cancer that required a bone marrow transplant. Doctors found a perfect match for Roy in 2009, but three days before the transplant, his donor backed out and the family was never told why. It took 10 months to find another donor, but by then it was too late and Roy died. Still, Chelsen is not convinced that offering compensation for bone marrow donors would have saved her brother’s life.
“What better incentive than what’s right in your heart?" Chelsen asked. "Are we a society now that we have to put a price on everything?”
THE PILOT PROGRAM
Shaka Mitchell is the founder of MoreMarrowDonors.org and a critic of the way current registries like NMDP currently work. He believes that compensation would encourage more potentials donors to sign up and then show up. Mitchell says he has a list of hundreds of people eager to participate in the program if it launches.
“For 1,000 people a year to lose their battles with curable diseases is unacceptable in our minds. Particularly when we can do something about it,” Mitchell said.
His website is part of a first of its kind program that would compensate bone marrow donors if the law changes. The pilot program wouldn't compensate in cash, but rather in the form of a $3,000 scholarship, housing stipend, or gift to charity. And that money would come from private donations, not from the patients themselves. It's an incentive that advocates believe will change the attrition rate, motivating more donors to show up when called upon.
HOPE FOR A BETTER FUTURE
In December of 2011, a California court ruled in favor of compensating bone marrow donors, but the fight is far from over. The case now lies in the hands of the U.S. Attorney General and could very well be headed to the Supreme Court.
“If that happens,” Rowes said, “we’ll stand there and we’ll argue for freedom, and we’ll argue for the lives of bone marrow patients across the country.”
In May, the Flynn family had more reason to be hopeful. Jordan found a match and headed to New York City for a bone marrow transplant. Her donor showed up, donated, and now Jordan is on the road to recovery. But her mother has two more daughters to be worried about. “I wish I could donate my marrow to them, but I can’t, I’m not a match,” she says.
And she vows to continue to fight for her daughters and patients everywhere to increase the odds that more people will keep their promises to donate bone marrow and save lives.
Rima Abdelkader helped contribute to this report.
People get paid to donate rare blood types, blood regenerated, bone marrow does.
Mmmm, I'm not rich and if my wife or child needed a kidney I would be willing to sell one of mine to the highest bidder to pay for my family member to get a transplant. It's simple economics and I don't care if someone gets paid as long as the organs get used.
If I were you I would be trying to buy a Kidney from Mexico. Heck if Dick Cheney can buy a heart anyone should be able to get a organ. Cheney says it was "donated" but you know he bought it in some third world country.
My friend has not had her kidney for 30 years and unfortunately will not be getting one any time soon due to her t cell counts. ;< Good Luck
I'm totaly confused here. I worked at the Fred Hutchinson Cancer Research Center in Seattle, and I'm here to say that I did get Compensated for my Aphresis for bone marrow extraction. Did they do something illegal at the Hutch by compensating me for the Aphresis, or did they just compensate me for my "TIME" four hours plus I might add?
Were the cells used in a clinical trial?
I'm not sure? It is a teaching cancer research center. Would that make a difference? I'm just trying to get educated here?
Thanks
That might make a difference if it was for research rather than an actual transplant, or if it was a transplant for a patient involved in a clinical trial. Thank you for your donation though.
My brother died from having Fanconi anemia. He went all over the world to get a bone morrow match with no luck. I PRAY TO GOD this woman is able to do whatever it takes to keep her daughters alive. SO SAD.
My father required a bone marrow transplant for a bone marrow disease. No family members matched but we were eventually able to find a match trough the registry, a very low percentage of a match (only about 50%). A second donation was requested about two months after the transplant but the donor declined. My father died three months after being admitted to start the transplant procedure.
Donating marrow is not the same as donating blood. Their are physical requirements and demands made on a marrow donor that require time, money, pain, and recovery. The NMDP even charges registration fees to some donors. The physical affects of being a donor have been reduced some in the ten years since my father's transplant but their is still a level of commitment and physical strain that should not be accompanied by a financial strain. If more people are needed to donate, and I know from experience that they are, then make it easier to donate and not any more of a hardship than necessary. I was tested to be a match for my father and you would think that would put me on the registry but no, and my father's insurance was billed for every family member that we tested.
I just signed up to donate.
No one has to pay me if I might be a match and could save another person's life.
I hope everyone who reads this far down does sign up - it took me less time to do than it did to read all these messages.
"Are we a society now that we have to put a price on everything?”
Unfortunately, yes we are. This nation is now one of the greediest I know of in regards to people wanting to be paid for everything. After all, just look at the ads on TV for lawyers telling you to sue everybody for something. Personally, if someone wants to be paid for their bone marrow and they are a perfect match for you, pay them. It is, after all, what we're taught from the time we're old enough to understand what we're seeing on national television.
This is one of those instances where fetal stem cells could probably be used because they lack sufficient genetic information to be a mismatch. Talk about ethical questions. Mark L, thanks for signing up to donate, I would if they let lymphoma patients do it.
Lets see, women can sell their eggs, men can sell their sperm, anyone can get paid for blood and/or blood plasma, but life saving difficult to obtain bone marrow somehow is different. Shouldn't we be able to exercise any and all options that may be necessary in obtaining life saving substances?
For many years I was a regular blood donor,25 gallons. I was also aregular platelet donor, over 100 units. I started giving platelets when NIH first started experimenting with 'foreign' donors, i.e. donors with no family relationship. When NIH first started experimenting with foreign marrow donors, I was one of the first volunteers. Sadly, I failed the last step in matching, else I might have become the first foreign donor for marrow. I will point out that, with reputable collection agencies, there is no risk to the donors.
At one point during my donation years, the FDA decided, in its 'wisdom', that a donor had to wait 8 weeks between blood an platelet donations. The NIH fought it to no avail, That 8 week period put donors in the situation of playing G-D, which should I give, for the rule made it impossible to do both. I first wrote to my useless Congressman, Hoyer,, who, at the time, was head of the House committe overseeing the FDA. I was finally able to contact Pres. Clinton, who did have the FDA rule reversed to its original state, albeit wit a six month delay for the reversal.
Enough of this nanny state. Marrow donations entail no risk to the donor. An even lesser inconvenience than when it was first experimented with. Sure there may be a 'tainted' donation, but the alternative is sure death for the recipient. A payment for the donor's inconvenience? Why not. When NIH first experimented with platelet donations, they paid the donors, an amount that the vast majority of donors immediately put into a victim's fund.
If the plaintiff could use my testimony in furthering her case, I will be glad to volunteer. mortfriedman@msn.com
OK so I was a donor for my brother, and this process can take from 24 to 48 hours, luckily for me I was financially capable of taking the time off, but for a stranger to not only give up time to find out if they are a match, they also have to go through if I remember correctly 5 days of shots to increase your marrow levels, then possibly 2 days to pump their blood out then back into their bodies. Not that this is difficult, however, it is time consuming, so for me to compensate someone for time to save these precious lives, then I say lets do it.
Did they freeze your cells? I had a transplant using my own cells, and they were frozen after harvest. This article talks about availability being an issue for the donor and I don't really see how it could be a problem if they freeze the cells. I will most likely need a donor transplant in the future and I'm hoping my siblings will be as kind as you have been.
I had a situation in the past where I could have been a possible donor for bone marrow - something I would have been glad to do to save a child's life. But - they would not even consider taking my bone marrow because I lived in England from 1979-1983 and there was some infinitesimally small chance that I had been exposed to mad cow disease. So rather than take a chance, our liability averse society would rather have the child die than use my perfectly fine bone marrow. By the way, I have never in 30+ years now ever had anything even remotely related to mad cow, but the Red Cross will still not even think about taking my blood - but they take blood willingly from alkies and druggies.
They could have tested you for that exposure but immunity tests are involved and expensive. As a lymphoma survivor, I can donate organs but no blood or blood components. Seems odd. And alcohol or drugs do not remain in your blood like viruses do.
People can sell their blood and platelets so tell me the difference. It is not like taking a life sustaining organ from one's body.
I feel that marrow should be equated to blood and treated the same. It is, after all, a renewable bodily resource in healthy people. Many people give blood voluntarily but others take compensation. I see no practical difference except for the more difficult method needed to collect the marrow.
Collection is nothing more than blood going out of your body, into a centrifuge, then back into your body without the stem cells. Really not difficult, its that separation machine that makes it expensive.
haha, it didn't post the edited comment, oh well. I'm tired now.
DrRWKline--
I have donated whole blood since I turned 19--some 48 years. I have yet to paid, other than a doughnut in the US or pint of ale in British Hong Kong. Plasma Center's compensate donors--I have one thing that is of great value, blood (O+ universal donor blood type), the staff of life. Giving makes me feel good!
Uh, Hello? You mean to tell me that bone marrow cells can be harvested and it DOESN'T HAVE to hurt?? Why hasn't anyone told me about this?
I'm going to sidestep the "payment for donation" argument for now. I remain terribly conflicted about it anyway. But the reason most people don't donate is the perception, just like with rabies shots, that this is still an incredibly painful process. That's what has kept me from committing all these years.
Now that I know that it doesn't have to be that way, sure - I have a few hours to spare to get onto a registry that could possibly save someone's life. I'm a human being - why wouldn't I? Why shouldn't I?
It would seem to me that I'm probably fairly typical and that most people still believe that the process is necessarily dangerous and extremely painful, so the solution here to increasing the numbers on the registry should be to ADVERTISE this very salient fact.
If more people were aware of this, I'd bet the numbers would increase substantially and immediately. If there was ever a good reason for a public health campaign, wouldn't this qualify?
What hurts is the pressure from inside your bones once the stem cells start to grow like crazy from the growth stimulant. They grow faster than they can get out into your bloodstream. For me, it was about 20 hours of pain. The pain of a hundred bone marrow biopsies! I'm not trying to discourage anyone but I would have appreciated knowing.
I didn't realize there were so many registries. Do they cross-reference? I joined one registry, but does that include me on all of them or do I have to join each individually? I would love the chance to help out someone in need. I don't need to be compensated monetarily, but it would be nice if my time off from work and medical expenses were convered somehow.
It's a slippery slope....if you can buy a body part (and marrow is a part, but it regenerates), then you will eliminate those who cannot afford it. I donated marrow in 1991 (October 2011 was 20 years of good health). When I was told I matched, the decision was a no brainer to donate. I knew nothing of the recipient, whether he was a person of means, whether he was employed, whether he was a racist....none of that mattered because, at the end of the day, I was giving a person hope that he would have a chance at a longer life. For him, it's been 20 years (even though his health is not so good these days). I understand this woman's plight -- she will do anything to save her kids, but the bigger picture is more problematic and will result in those with means getting preference for donations over those without.
Just my two cents...not an easy one...
Dude Dad, people who can't afford expensive medical treatments are eliminated anyway. And the "big picture" is lots of people dying because they are not allowed to pay for transplants.
This is a tough call. There are already 17 million people on the list now. Would there be more if they were being paid? If the issue is about people backing out the last minute, I guess I would just ask what type of person would say they were going to donate marrow, and then back out at the last minute even though the person they were donating to may die because of it? I would have to question how well the NMDP is confirming the donor and communicating the ramifications of not following through on the promise to donate. Would this problem even go away if people were being compensated for the donation? I doubt it, the problem may even get worse as people decide at the last minute that they don't need the $3,000 as bad as they thought. What would most likely happen is that the number of donors does not really increase and that we just add one more expense to our current healthcare system.
I have donated blood, also pheresis, all without compensation. Because pheresis is ~ 3 hours (start to finish) it is time consuming (yes, work places look poorly on taking time out to do this) and it leaves me so tired/weak I must go home afterward without stopping ANYWHERE and go to bed, it is taxing on the system. Plenty of water later (to re-hydrate) I feel better and each time I say I'll skip it, I remember those children who are battling cancers in hospitals and I do it again. Blood donations in themselves can be further separated into plasma so whole blood can be obtained from a person every 6 weeks, while pheresis can be done weekly if you'd like. I have not yet become a marrow donor but am thinking about it although my type is readily available to those who need it (so I'm told). As to compensation, I don't think so. People have to WANT TO BE ALTRUISTIC - we can't legislate that!
I have to agree with many of the other comments. Men are paid for sperm donations and men and women are paid for plasma donations. The same should hold true for bone marrow donations. Also, there is no direct contact between sperm/plasma donors and recipients. The donors are paid at the time of the donation. Can't bone marrow be handled in the same manner? I'm sorry but I don't know how bone marrow donation works. Does the donor HAVE to be present with the recipient at the time of the donation? Even if that is the case, couldn't there be a flat rate payment to avoid any type of bidding war that would benefit only those that could pay? Come to think about it, who pays plasma donors?
You mean I can get paid?
You cannot put the marrow in a bank for later use....the "old" way (when I donated in 1991 for a leukemia patient) was to harvest the marrow from my pelvis, the largest place for marrow. Now, they can in most, but not all cases, inject you for 5 days to make your marrow go into overdrive, then harvest the cells from your bloodstream...
Yes you can. Bone marrow transplantation was my first job out of college. All the marrow we harvested (iliac crest) was frozen for later use. It is stored in liquid nitrogen.
The idea to allow payment for marrow or any other organ is deeply flawed from so many perspectives that its ludicrous. The fundamental idea of altruistic donation is to eliminate coercion or other criminal, profit driven possibilities from the system. Furthermore, there are also sound medical reasons for altruistic donation, a paid donor may conceal relevant medical history that would make him ineligible and that could cause harm rather than good. I can commiserate with this woman's problem, however, the end doesnt justify the means.
what about those that can't afford to pay for a donor??
The problem with paying donors is that the organ, in this case the marrow, goes to the highest bidder with a match. Those who can't afford to pay will go without. It becomes an elitist system. i vehemently oppose that kind of medical care.
As for the people complaining about doctors jacking up the cost of medical care, it is the insurance companies and pharmaceutical companies creating the high cost of medical care. They are making obscene profits on the backs of the insured and doctors. If you have insurance, take a look at your EOBs and see how little they actually pay the doctors. Insurance companies are driving the decline in the quality of medical care in America.
And still there are so may idiots that opposes the Health Care put into Law by the Obama Administration. People like you I hope you stand up for the Health Care Law and push to improve whatever flaws it might have. I Vote for the single payers that will drive insurance cost down and madical care thus will be much better for all, including the very very rich.This is a joke
YOU Wake Up...because as it is, everyone is going without needed transplants. Anyway, if more organs were available, the price would go down. That's called Supply and Demand.
You have blood donors that go to the Red Cross for non compesated doning, and you have the blood banks that pay the guy for his pint of blood. So what is the difference in compensating bone marrow donors. I mean damn if you do and damn if you don't, come on, this is laughable. Strike down this stupid law, unless there is a strong particular interest behind it, to me is the most rediculous to say the least. And speaking of altruism, where is it when you deny the opportunity of life to a really needed person? Tell me where is the so called altruism that these folks are talking about. I mean if altruism is the action for a better good, where does life stands on here?