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.
I have donated both bone marrow and stem cells and i can personally tell you that the bone marrow was FAR less painful than the apheresis donation. The medication that they give you to stimulate production is what they give to Leukemia patients and in a healthy person it hurts like HELL!
As far as being paid to donate, I think it is a good idea but should not be necessary. We pay people to take experimental medications during testing and trials why should we not offer a compensation for a donation of regenerative body parts. We pay women for donating their reproductive eggs. I like the idea of it not being in cash to alleviate some of the problems with desperate people strictly donating for cash
Any self respecting person SHOULD donate out of the goodness of their heart for the intrinsic rewards only. I have my physical and psychological assessments for a living kidney donation a week from today and I am actually excited to do it because I know that I will be helping someone in need.
The purpose of money is to improve lives and save lives, so whats wrong with compensating donors with money? Besides, this is already done with all blood products.
I agree with you! People are paid for blood and plasma donations. What would be the difference if people were paid for bone marrow donations?
you pay for using resources other people produced, it may be labor, but it may also be bone marrow. this is the capitalist system and yes the highest bidder wins and the loser dies.... this is the tenet of the republican party, only the strongest (richest) will survive (and yet they are against the theory of evolution, go figure). great if you can find altruistic society, i doubt you can force to shape an altruistic society by law so whoever think it should be that way is just naive and has no place in the real world, perhaps that's why he advocates those poor souls just go straight to heaven when they can't find suitable donor willingly give to them.
BAnn - that is a common problem between the races - compatibility. The compatibility factors do vary between races. In some locations the need is greater for Blacks and Asians. All organ donation organizations will tell you there is a much greater need for Black donors to meet the need.
BAnn
I wanted to sign up to be a donor but was told but our local blood bank/donor registrar "We don't need any more white donors - we need black donors - so we won't sign you up or test you". Gee, thanks a lot. I didn't know they changed the donation process - now, more than ever, I want to be able to donate. The chance to actually save a life!? Who would say 'No' to that? If I get compensated? Well OK, I wouldn't turn it down but I'd donate without compensation. If they'd only let me sign up.
Maybe im wrong, but i thought blood cells were the same regardless of skin color?
Blood cells are the same within it's type. For example a Type A would be identical regardless of the color of the donor. Bone marrow is based on ethnicity - there are markers that have to match or the marrow won't engraft in the transplantee, and can cause other issues. That is why - especially in the USA - where many different ethnic backgrounds are all mixed together - your first chance at a match will be a sibling.
The matching criteria for bone marrow are the same as for major organ transplants. The six HLA's are used for matching - you get 3 from each parent.
I am a bone marrow transplantee. I will be forever grateful to my donor - my sister. For the record, I had been on the donor list for about ten years, and was never called to donate, but wanted to. In my mind I could picture saving a life...at any rate, as fate would have it, I ended up needing the transplant. Without it, I would have died. Now 6 years later, my disease is cured, and I'm better than ever. My heart goes out to anyone who needs any organ - in many cases someone has to die for someone else to live. But not bone marrow. A bone marrow donor will be just like before they donated after a few weeks.
You would need to have a compensatory system where it wasn't abused. I think sperm, egg and plasma companies who pay for donors are privately owned, where Be the Match is a national non-profit. where would the money come from? I am sure they have enough trouble meeting financial obligations.
Anyway, I would encourage everyone to consider registering. Saving someone else's life can surely give meaning and purpose to your own.
I tried to register. I was rejected because I have had breast cancer. Sucks.
I hope you are cancer free and healthy. Your well meaning intent is a thumbs up in my book!
If I had a child that needed a morrow transplant and there wasn't a match on the registry of 14 million people, I would do WHATEVER it took to find a match. Altruism or not, if a donor is healthy and motivated by money, I'd pay hands down, no questions asked.
On the flip side, I've never even thought about donating bone marrow. And honestly, I am a good person, but everyone needs something nowadays., so I do what is convenient for me based on my work/school/wife/mommy duties.
If I were to become a donor, take time off of work, school, away from my family and child, altruism or not, I would like to be paid for my time. I'm not saying thousands, but maybe a hundred or something like that. So I agree. As a parent, I would pay, and as a donor, I would like to be paid. I don't think that's selfish. At work you don't get paid for work you don't do. I also would not donate a kidney because I know wouldn't be compensated. While I only need one, there is a possibility down the line that I might need one. I would not donate something from my body for getting nothing in return but the warm and fuzzy feeling of humanity. I already know that I am a decent human. I give tangibly in my life and volunteer my time, but I would need to be paid in exchange for my body parts.
It's not black or white. As a parent I would totatlly be fine with paying. If I needed a donor for something, I would be okay with paying. I guess I dont' see why the government is getting involved with people donating body parts.
Yus
you pay for using resources other people produced, it may be labor, but it may also be bone marrow. this is the capitalist system and yes the highest bidder wins and the loser dies.... this is the tenet of the republican party, only the strongest (richest) will survive (and yet they are against the theory of evolution, go figure). great if you can find altruistic society, i doubt you can force to shape an altruistic society by law so whoever think it should be that way is just naive and has no place in the real world, perhaps that's why he advocates those poor souls just go straight to heaven when they can't find suitable donor willingly give to them.
Humans via the development of society evolved past simple survival of the fittest thousands of years ago. So this theory of survival of the fittest no longer applies to humans, because through both society and technology we have the means to meet everyone's needs, at least up to a population of 10 billion, probably more.
yes we have evolved into the survival of the richest.... awesome.
I have heard that donating bone marrow is very painful, and i abhor surgery so my reluctance to donate for any but my loved ones is not born out of selfishness. If it is truly painful, but there was a generous compensation for the donation, then i might be willing to go through the pain for someone i dont know from adam or eve.
It's not painful at all.
I was able to do a donation about 15 years ago. MINIMAL pain. I wouldn't even describe it as pain, more like a discomfort for a couple of days. Kind of like slipping on the ice and falling on your butt. No worse.
My late wife, a Leukemia patient, waited two years on the registry for a matching bone marrow donor. By the time they found one, it was too late. Just like any transplant, the agony of waiting on the list is almost as awful as the disease. I agree that in a perfect world we shouldn't have to pay for donations but I'm also in favor of anything that increases the number of donors that actually follow through with their donations.
My concern is: who would be paying for the donor? If it is the patient or patient's family, then that means that only the wealthy would be able to afford the treatment. Someone who is not so fortunate may die waiting for an unpaid donor. It's not fair.
It could be set up the same way as donors are paid for blood or plasma.
Some would say where will it end. It will end with more people signing up.
Lets just say that I believe if a woman can abort at any time because it is "her body and her right" and the aborted fetuses are sold for research, or other medial treatments, who has the right to say all people for any reason can not sell an organ can not fall under those same guide lines.
Since it is already the law, why not just add an addend to the law and make it legal for paying for bone marrow which is a lot more unoffensive than selling aborted fetuses.
wow, I just tried to register and it said they had too many volunteers! Very odd that people are so in need but aren't getting the help even though they have so many volunteers! Interesting
Bone marrow donations should be altruistic... but, by the same token, they should not cost the donor anything either... Back several years ago, I joined the Bone Marrow Registry... since then, I have changed jobs... My new employer does not provide sick time and is very stingy with vacation time... If I was called by the registry because I was a match for someone, I would have to think really hard about donating... only because the additional testing and the actual donation would take time away from my job and I would lose what little vacation time I have... There needs to be a law that states that if you are a match that your employer has to compensate you for any time away from the job related to the donation... and that they can't tap into your vacation time...
I would say not that your employer needs to compensate you but the insurance company for the person receiving the marrow compensates for lost work, and such. Not for profit, just to zero out expenses.
I am in the same boat. I am on the registry and thought never called would have to balance getting work to let me have time off and not getting fired (i.e. feeding my family) against potentially saving a life.
I think if you remove that issue, you would see a lot less issues. I am not for paying for profit. IMO, it leads to a world where EVERYONE would have to be paid for it and that would significantly raise medicals for what is already an extremely costly process.
Explain it to me, Why is it okay for doctors to get paid for transferring bone marrow and for being involved in the entire process, but not okay for the donator to be paid? What gives doctors the right to decide that others should give for altruistic reasons, when they are not donating their time and efforts?
People are paid for blood and plasma donations. What would be the difference if people were paid for bone marrow donations?
I got a letter that I was a potential match, but although I am healthy and can donate blood, I failed their health screening. They are very selective on what previous or current medical conditions you have or have had, even it was over 20 years ago. For example, sleep apnea will get you deferred. Little wonder it is hard to find donors. Some of us are willing to donate, but we don't meet the "Be The Match" gold standard.
Same here. I cannot be a marrow donor. I do donate plasma and platelets (without being compensated). I had thyroid cancer 11 years ago and this automatically excludes me for life.
Paying to donate - its an ethics nightmare -
The wealthy would be able to feed off of /use /steal the life /health /body, etc. of the poorer "lesser" people who need the money. Cattle anyone?
Who gets the money? the person donating? the "finder"? The "guardian"?
Can you see all of these corporations that would start up willing to match a patient with a "donor"? At what fee? Greed anyone? But of course, these companies would be "helping".
I can understand a mother trying to do anything to save her children's lives, but there are actual thought-out, ethical reasons why donors should not get paid.
The question becomes - if she wins - who will use her "win" in court to justify "buying" other donor-necessities to prolong someone else's life at the expense of a "poorer" person who needs money?
People are paid for blood and plasma donations. What would be the difference if people were paid for bone marrow donations?
Because that blood and plasma is not being "bought" to save the life of a person.
Generally, those "paid for" are bought by pharmaceutical and cosmetic companies to use, experiment on, test, etc.
Law forbids any "paid for" blood donations to be used in any transfusions given to people by hospitals.
Voluntary donations are only what is used to "save the life of another person".
Again, it is an ethical consideration which exists to protect health and lives.
I also am a bone marrow donor, I my only hope is to, one day, be the match to somebody.
People are paid to donate blood and plasma. Why do we need a law against donating bone marrow. Bone marrow can help someone live the same way blood and plasma can.
blood and plasma that is "bought" is not being used to save someone's life-
more than likely you are saving someone the embarrassment of having their face break out from a make-up reaction or testing blood cell's reactions to certain dyes.
I don't agree with paying donors necessarily, but forms of financial help could prompt more individuals to donate. In the last year I have gone through the process to become a live kidney donor and have set a tentative date for the donation next month. I am responsible for all of my own travel expenses and time off of work, which has added up during all of the screening and testing process. I want to add that I am lucky, as the transplant team has gone out of their way to accommodate my schedule and make my travel time and expenses minimal. However I will be taking a week off of work for the donation (they really do recommend longer) but that is what I can manage for my job and finances. I am happy to donate and am doing so anonymously to facilitate a paired exchange for individuals who have a donor, but that aren't a match for them. The process creates a chain of donations with the ability to facilitate several transplants. It has been time consuming and I am fortunate to have an employer who has been accommodating, but not everyone is so fortunate. Compensation for travel, time off of work, ect. could make the difference for others to be able to donate.
I don't think they are necessarily talking about letting the patients and their families bid for the marrow. A simple flat rate for any donation would provide an incentive for the donor without introducing the problem of wealthier people being more able to pay for the marrow. Same thing if they paid for expenses incurred by donating. It's a shame that altruism is not incentive enough but we must face the reality that offering compensation would increase donations, and then everybody wins.
Paying for donations is a very bad idea. First off a person should want to donate and if you put a price on it then it becomes a Rich persons domain. As it stands now anyone can get the donations regardless of financial status. Where wuld it stop. what if organ donors put a price on their organs to be paid to ther survivors. They could hold out for the highest bidder. No paying donors is a very bad decision.
What would you say to just paying the travel expenses? As in compensation for time off work, etc, so that the donors simply come up even (i.e. they don't risk losing their jobs because they don't get enough time off, or face financial hardship because of loss of pay) That way people would have the means to actually be able to follow through with their donations, and since they wouldn't be actually making money, couldn't sell to the highest bidder.
I pray the little girl does get her transplant, I also hope she does change the law, in this capitalistic society we live in today people would throw their own mother's under a bus for a buck, why can't people sell marrow? it's theirs and should be their choice. Compensation is as unethical as buying eggs or beef at a local market. The law is ridiculous and should be off the books. It will save more lives than it will hurt.
you get this wrong, it is not about somebody buying "parts" (and then the richest people will outbid anybody else) but about paying the one who donates. huge differences. my guess is the hospital will pay a flat fee to the donor.
I am not really understanding the whole donor not being available thing. I had a bone marrow transplant, and although I was my own donor (autologous transplant) the stem cells were frozen after h"harvest" and then thawed at the time of transplant. Seems that if someone is going to donate, they can donate whenever they wish. Also, my stem cells were tested for viruses, immunities, etc. before being installed so I don't see how disclosure is an issue.