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.
Explain it to me again...
Why is it just fine for a woman pay a doctor to kill an unborn life in her body, but not OK for her to receive money for donating life giving bone marrow cells from her body?
Sort of a disconnect here...
There's probably some religion who will find bobe marrow transplants to be against their god...like christians' infatuation with a womans body and her decisions...
Then I guess the medical establishment then should practice what they preach.
They should treat people for free and be altruistic - and not in it for the money.
But we all know that the medical industry makes billions off this industry and also the organ donation industry. They don't want to fork out $$$. They want it all for themselves.
Are you talking about doctors? Or which part of the industry? Because doctors are 15% of all medical expenses in this country. You pay twice as much to your insurance company to process forms than you pay your doctors.
We already pay blood donors. Why should we not pay bone marrow donors?
I think we should stick with the story. Abortion has nothing to do with this story.
I'm sorry to disagree with you on this. Blood donors cannot be paid for their blood. Only plasma "donors" are paid. Except for plasma, all blood products: whole blood, platelettes must be obtained purely by donation from donors who do not receive any compensation.
Obviously waited too long for the brain cell transplant.
"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"
Not sure how that gets classified as a bone marrow transplant. That is a stem sell transplant. "Problem solved!" </sarcasm>
I'm not touching the abortion comment, but I do think providing compensation for donors makes sense. We pay blood/plasma donors, sperm donors,and egg donors, so why not pay marrow donors and have a better chance at saving more lives.
If I want to sell some blood then I should be allowed to do it. Nothing more should need to be said. As long as it is my blood I'm selling, and not yours, I am doing nothing wrong. If I'm collecting marrow via the newer method of extraction, then it is my choice. I can regrow everything I donate, so let me decide how best to use my body. I can buy a vial of horse sperm to get my mare pregnant, but I can't buy some marrow to save my child's life.
That is not true, there are plasma centers that pay for whole blood donations. The donors can only donate whole blood once a month, but they absolutely get paid for it.
Because it could grow up to be someone like you.
Huh? Get off your soap box...
@IGHwoman - So do blood donors pay for the shirt? Do they pay for the juice drink that they recieve? Do they pay for all of the extras that are given to blood donors during these blood drives? No I do not think so, sure that' what 10 maybe 15 dollars of goodies, but it is compensation nonetheless.
I say let them pay, if it saves just one childs life it is worth it. The problem lies in the poor and is the reason this will probably not get very far. Because the poorest of us will not be able to pay for it and therefore will need government assistance or "donation". I would assume that the government will argue that it is unfair to make marrow donation a market product at cost because of the gap between those that can and those that cannot.
If it was one of my kids, I would pay!
Richard, being a man why should you get to decide what is best for your body, when women do not?
How much do the hospitals and doctors charge the patient for your "altruistic" bone marrow? I'm sure they don't want to talk about that.
explain it to me again Jacques whats one got to do with the other? Im guessing that you've drank the republican koolaid, and really think abortion is somehow the underlying issue with everything. Well guess what liberals don't like abortion either, what we do like is womens healthcare,and we are endanger of losing it if people are dumb enough to believe that this issue is worth voting repubican for. Think about millions losing medicare,social security,& millions of dollars in tax cuts for millionaires, & corporations being paid to send American jobs overseas. Republicans don't care about abortions or you! Now do the liberal thing, go donate some bone marrow free of charge right now!!!
Like pugface above stated. The medical industries make BILLIONS on the organs WE donate. It's about time some compensation went to people who are able to donate bodily items which save other lives.
@James-546195-1049965 - too funny and right to the point !!!!
What a bunch of crap!!!!
People should get paid for their bone marrow. As it regenerates quickly, it's not at all like selling an organ. I also think you or your family should get compensated for organ donation.
It's wonderful to be charitable, but the doctor's, hospitals and insurance companies make money for taking it from you and giving it to someone else, so the ultimate provider (the donor) should be compensated.
Giving bone marrow is an uncomfortable procedure, with risks. I certainly would think more about adding myself to the donor pool if I knew I would be rightfully compensated for my marrow, time, inconvenience and discomfort.
Remember Ryan White?
I remember when the AIDS epidemic started. Lots of people didn't volunteer their personal activities so that they could sell blood, and purchased plasma was routinely given to hemophiliacs burn victims, and others. Having the money for the sale was more important than worrying if someone was going to get sick.
Purchased plasma is no longer given to hemophiliacs or burn victims, which is one of the reasons why there's always a blood shortage. Even now, many people don't know of or disclose their HIV status with their sex partners, and those partners unknowingly pass along the virus in their donations, so their is still danger for the blood supply.
And those tee-shirts and water bottles and canteen snacks? They are donated. I make homemade cookies for the local blood drive, or buy crackers. Keebler provides theirs for the blood centers.
Why is OK for yo momma and to dance on my lap for pocket change while she blathers on about the abortion she should have had ?
Today donated blood and plasma is tested for disease before it is used. I am a rare blood type and even though they need my blood it takes a while before it can be processed and put to use. I agree that plasma, bone marrow and blood donors do deserve compensation. This isn't a one time deal for most, usually it is monthly or bi-monthly, taking time and often gas to get to the donation center. Sperm donors and egg donors get compensation, surrogates get medical care and often living/traveling expenses, but the ones who actually save lives on a daily basis are supposed to be altruistic about it while the medical machine sells the donated product.
As far I know, there is no objection in any mainstream religion from selling bone marrow - this includes Christian as well as Islamic faiths. The sale of vital human organs pose a greater ethical issue though. And unfortunately, there is a current underground "market" in organs. These are organs from poor countries to wealthy countries. That is the primary problem. A Japanese ethicist says the desire to live a longer life would make a wealthy person look upon poor person as a commodity that would help him live longer - and a poor person look at his own body in the same way. He says that the sale of organs could be reasonable viewed as "social or friendly cannibalism."
Listen, instead of the Hippocratic oath today's doctors take the hypocrite oath. Everyone knows that if someone "important" were to need bone marrow there would be a "deal" struck so that "important" person would get what he needed. Whether they pay the medical institution to be bumped to the front of the list or pay the person with the match. Somehow it would be done.
@Babs,
That is a load of crap. The vetting process for donors is very strict. Live donors must go through an extensisive amount of medical testing before qualifying to donate. Even for deceased donors whose medical history may be unkown, must be thoroughly tested before any of their organs are used for transplant.
The issue is that some fear that people will exploit the system creating organ brokerage agencies, and the trafficing of organs will result in some sort of black market. I am quite certain that a certain anumber of these "altruistic" donations going on involve cash deals under the table.
I think there should be a set fee paid to those that donate their organ(s), alive or dead.
I'm not sure why it's the governments business to be regulating and restricting organ donorship or transplants...if I'm a donor shouldn't I have a right to sell my wares to the highest bidder?
Paid organ donations lead to poor people who are desperate for cash selling their organs to the highest bidder. It also means that only rich people will be able to afford transplants.
Yea, right! Pssst..........hey mister, look inside my raincoat, I got a lung, a kidney, a heart What do ya need? $5k for the lung, $4K for the kidney, or we have a special on hearts today, buy 1 get 1 free!! Next thing you know, they will have a Groupon site for organs.
I have a feeling that if you could pay for organ donations, that there would also be more killings to get the money for the organs. Think about it.
Elpea, the difference is bone marrow is not an organ.
Rick-546746- Have to take a shot at religion, huh? Your intellect must be very expansive...
Good point Elpea. Whether it's for organs or bone marrow, if a price is place on donating these then only those of means would be able to afford it.
There is a difference between organ donation, where someone dies and donates the organs, and people who will sell part or all of an organ. I see no problem with it. This would leave all the poor people with the ability to use the organ donor list, as they do now. The rich could pay for organs.
non-first, the problem isn't religion, its the fact that certain religions want to force others to live the way that the religious thinks god said they should.
live according to the way you think god told you to, that's fine, but don't force what you think god told you to do onto others
Rick, the government regulates organ donation in order to prevent criminals from abusing this field. In India and other third world countries, people are murdered for their organs. It was for many years even practised by the Chinese government who sold the organs of people who had been condemned to death - mainly for "politcal crimes" - on the internet.
That is why the government has to have an oversight. Having aid that, I do believe that there is little difference between blood donation and bone marrow donation. The donor does not have to risk or give his life in order to donate. I hope that she will be succesful.
Rick, it seems to be the baby's body that is injured during an abortion, not the mother's body.
Back before 1984 people were killed for the sale of their organs. Organs are still being sold on the black market. Most of the time these stolen organs came from people nobody would miss. The homeless and runaways are fair game when it comes to the black market.
On the other hand I believe that blood, blood born stem cells, and bone marrow are all fair game and should be up to the donor whether or not they wish to be compensated.
Steft50 is exactly right, bone marrow is not an organ. It's closer to blood, which is bought and sold all the time. Also, I believe the procedures used to get it these days don't even require actually tapping into one's bone anymore.
The only thing we need is to change the is law to allow for legal compensation of it in a controlled way, as we currently do with blood.
I'm more curious why, after she had the first child with a disorder, she decided to have more. I feel sorry for the twins, but some people can be so selfish. If you're going to pass on something to your children, don't have children! It's not rocket science people.
Steft50 and 66Mustang, I agree, we compensate for sperm and eggs, and even surrogates get medical/travel/living expenses, but oh no, we can't pay marrow donors? Why? The medical machine takes the donated materials and charges for it, why should they profit from something they refuse to pay for?
Wouldnt it be quite simple to pass a law that states the donor needs to be in the same room has the receiver, when buying or selling organs? Alot more people would have a chance at a 2nd life again, especially in this economy..
Also why would anyone donate bone morrow? Its very painful, obtrusive and takes quite sometime to recover.
I agree the medical industry just doesnt want to pay for the organ, they have no problems selling it to the patient though, through extremely high processing fees..
Just because you get one child with Down Syndrome or one with a form of cancer doesn't mean the rest will be born with it. I have one child with blue eyes, the other two have green... should I have stopped when the blue eyed one was born since I like green better and chances are the rest may be born with blue since the first was? There's no way of knowing if subsequent children would be born with the disorder without amniocentesis and many choose not to do those kind of tests.
I'm thinking the GOP would be all in on this. They don't want any abortions, don't want to feed the poor, don't want to educate them, and they could get there organs when they need them. Sounds like a plan for Mitt to me
Actually im shocked the dems arent, just think they could get those 44 imprisoned organ dealers out of prison and back into office, while the mainstream pundits tout it as a breath of fresh air..
I don't know where you've been all your live but those with money and means already get it when they need it. Movie stars, politicians, etc. are in the paper all the time getting transplants almost immediately after coming down with a condition that needs one while others less fortunate still sit at home and wait. They do it with the story that the person getting the transplant is a match where others weren't.
I agree with the concept of being paid for marrow donation. It's not an organ. It regenerates. They pay people for blood donations, why not marrow?
I also question why if this woman knew her first child had a blood disorder which could kill her, she went ahead and had more children. If this is genetic, she knew ahead of time that she could produce more children with this condition. It's not like Down Syndrome or cancer or most other diseases which are not linked genetically.
Read the article. Organ donation for money bad. Bone marrow donation for money: the bone marrow regenerates, and is mostly gathered from the blood, not the bone.
But, as with the blood supply, if you pay people, expect more diseases to show up. I hope donations are screened well for many diseases: HIV, hepatitis in all forms, prion diseases, cancers, etc. The cure could be worse than the condition.
I agree with Janine, assuming the woman did know her first child had a potentially fatal genetic disease. It is selfish in my opinion, for a person to have children knowing they have a good chance of inheriting and suffering from an incurable, horrible disease such as this.
As for paying for marrow, why not? People sell their plasma already. The procedure for taking marrow is more complicated, possibly more painful and probably riskier. People die unnecessarily because of stupid laws. Change the law and regulate it.
hey! murder is already a crime so no use in bringing up the old ' if we make it legal more people will die' argument because its simply not true. what should happen is that people who needs a transplant would have an option to pay someone through the hospital/doctor to give up the body part, there would be no legal 'back-alley' donors as no 'black market' body parts would be accepted., there would still be tons of people who would die being a organ donor or give it up for free but to tell someone they cant be reimbursed for time, suffering and loss of body parts is not freedom.
since bone marrow IS NOT an organ, the law in question has no relevance but hey go ahead and allow the government to lie to you and tell you it is, you people allow the government to do anything it wants as it is so whats the point in defending freedom.
the government has no authority to tell any citizen what they can and cant do with their body, the very definition of freedom is freedom over ones personal decisions and mind/body. you dont tell me how to live and i wont tell you how to live.
You get paid for blood, why not marrow? It regenerates, just the same. The only difference is that it is much more painful. Why not compensate someone for that?
I say if someone wants to sell their body part to someone who's willing to pay for it, let them. It's their body part.
For anyone jumping up on the soap box and judging her for having more children - I know Doreen - and it wasn't until Jordan was older that she was diagnosed with this very RARE disease. It's so uncommon that doctors don't automatically look for it... If I remember correctly, I think they basically found it after they tested for everything else they thought it might be. She was sick for a while before they figured out what it was. She and her ex-husband had no idea they were carriers. Let's remember this is a news story reporting abut her legal battle to change a law that could save many lives - they can't possibly fit every personal detail into a 10 minute new clip.
Then I guess the medical establishment then should practice what they preach.
They should treat people for free and be altruistic - and not in it for the money.
But we all know that the medical industry makes billions off this industry and also the organ donation industry. They don't want to fork out $$$. They want it all for themselves.
This is exactly what I was thinking. Medical professionals get paid. In fact, the medical field is one of the biggest money-making businesses in the world. People also get paid for donating blood. I don't believe vital organs should have a cost, but since bone marrow replaces itself, what's the problem???
Anyone have a link or a name to contact about having the test done? I'd like to look into this. I'm not up on new medical procedures. I always thought marrow donation was a long painful procedure. It sounds much easier. now
marrow dot org
Only half the people who need bone marrow receive it.
And selling to the highest bidder is the problem.
People are paid for blood and plasma donations. What would be the difference if people were paid for bone marrow donations?
The difference is that bone marrow can only be used for very particular patients, as several markers need to match up. Blood/plasma, on the other hand, is used daily - and they can and do use the blood from everyone that is healthy enough to donate - as it really only matters what blood type the doner/donee are. And even then, you can sometimes successfully receive a different blood type.
Yes, people are paid for blood/ plasma/ platelets donations. In the form of a snack, drink, misc. gift cards etc. (for your time). Yes some places buy your blood/plasma also. I would hope that this is not the true reason why someone would donate. Yes I donate platelets, and I am on the bone marrow registry list. I am lucky enough to be healthy in life. Not everybody is so lucky. I feel paying for bone marrow could be a slippery slope. So the person happens to be a match for your child but wants x amount of $ to save your childs life. Who sets a price on someones life? Young, old etc? Who regulates the cost to save a life?
@FLA SUN:
You 'feel' paying for bone marrow could be a slippery slope? How? If folks know they can get compensated for it, more would be on the bone marrow registry list, increasing the numbers that could make a difference. The person who is a match need not even know who it's for, just knowing they will be compensated and that they are making a huge difference in someone else's life is all they need. Blood donors with rare blood types never know who gets their blood.
It's far better to just do something than to just 'feel' it won't work for some unknown reason. Besides, if you have any children at all, you know you would want as many opportunities as possible to save their life if they were doomed to die because they just could not find an available donor. To let a child die for nothing is much worse than compensating someone for their bone morrow and their time.
Yes, make it like blood plasma donation. Then we can get a higher percentage of donations from people with alcoholism, drug addictions, gambling addictions, hiv, hepatitis, etc. In other words, make donation more attractive for people desperate for money.
@FLASUN - "Who regulates the cost to save a life?" Supply and demand regulates the price - there is a limited supply of course, but also a limited demand for a certain match. A donor eager to get money may be matched with a family that just does not have access to money. Whatta ya gonna do, sit and wait for another possible match, or negotiate with the only match you may ever get? It works both ways. Think about this scenario - a donor-for-cash gets a match, and it is with a mobster's child. The recipient family has lots of money, but they send an enforcer around with an offer. Sell the marrow for a dollar, or wake up with a horse's head in the bed. Or maybe they can just sever a leg and extract the marrow from the femur - thanks for the donation.
Ohhhhh. The difference is that the blood and plasma go to everyone, not a single person. Only the rich will get the transplant.
I donated plasma twice a week for most of the time I was in college. I wouldn't have done it if I didn't get paid, or at least certainly not as often as I did. That was gas or bar money, depending on the week. It wasn't much, $45 a week, but when your in college, extra money is extra money.
I donate blood now, as often as I can (I have a rare type - I've received my 1 gallon pin), and don't get compensated other than the juice and cookie, and will continue to do so as long as I can. I am also on the bone marrow registry.
I guess I have two points: 1) not everyone who could be a match is going to be an "altruistic" individual; and 2) it would most likely expand the potential donors significantly.
Obviously it would be regulated and there would be a set amount. It wouldn't be like gas prices where it fluctuates daily. I haven't heard of a poor person being denied plasma...if the medical industry can set a price on plasma, why can't it be done for bone marrow? I've never had to receive plasma or blood, but I'm sure all you'd have to do is look at your hospital bill to see what you are being charged for. Prices are already set on these things, the person donating just isn't the one receiving the monetary compensation.
66mustang & mailman8
Ok I do agree supply and demand (we do not live in a perect world). Would you feel better if you paid to save your childs life, but later your child suffered and died because someone just wanted $ so they lied on the forms. And yes I do have a child and would do anything for him. I'm lucky that myself and my son are healthy. That is the reason I am on the list. Maybe one day I'll be a match, hasn't happened so far, but I'm on the list. To you both would you only be on the list if you got paid? Did not cost me a thing to be on the list. Just like donating platelets or plasma just my time. To save a childs or somebodys life take the time. Life is short you never know could be you or your family one day.
What's the difference if the rich are the only ones getting the marrow? They took all the money, now they are going to take your organs. THE NEW AMERICA , GET IN OR GET OUT
Assuming that donors only matched rich people, you might be on to something, but I'm thinking a more likely scenario is that if something like this were to be approved, it would be built into the health care system (read "insurance" and "medical industry") much like receiving blood or plasma at a hospital would be. You think you don't end up paying for that? Its just a matter or who is getting the $.
Earmstr1 sensible comments. Mailman8 seems to think that this is going to be a craigslist type situation, with one on one contact with a potential donor paving the way for blackmail and horses heads in the bed and people being hunted for thier marrow. A national register Mailman8. That is how it would work outside of a work of fiction.
bone marrow is like blood, you can give or sell some and not really be missing anything for long because it grows back. .That is so very different than an organ or limb, that once its gone it never grows back.
and about organs, the donor gets nothing , but the medical system is paid handsomely for everything. maybe we should have laws limiting how many times more per hour the insurance companies and doctors make than most of the patients. blood suckers get their money, why not pay the peons for their time as they help some unfortunate soul. Or should only the medical industry get paid for their time?????
you have no right to someone elses body parts! you want to talk about greedy, whats more greedy that wanting to take from someone without compensation!! no one owes you a damn thing in life and that includes EVERYTHING, you want something you go out there and find a way to get it. i have no empathy for anyone who cant fend for themselves but ask others to do it for them without an exchange.
your life is not worth more than my life, so why do you expect people to just hand you body parts for free? you want a body part to save you life? pay for it or accept what life is, a risk.
A very expensive transplant is better than no transplant. But making it legal to exchange money for marrow doesn't automatically mean cruel people are going to burst out of the woodwork to taunt these people-in-need with outrageous prices. Those sorts of people already operate on the black market. Making it legal just might encourage some folks to help who wouldn't necessarily consider it.
you can get paid to donate sperm, but not bone marrow? doesn't make sense to me. I am on the bone marrow registry and would gladly give without compensation, but not everyone feels this way.
You can get paid for donating sperm? Damn, I've wasted a LOT of money in the past 20 years!
You're exactly right, momoffour. Why should it be legal to donate sperm, but not marrow/marrow cells? Both regenerate.
Last time I looked, the gov't regs even restricted compensation for time out of work, travel, etc, and was iffy on whether covering the donor's actual medical expenses was allowed. I'm currently unemployed, so time off work wouldn't be an issue, but I have no money to use for a commute, and no health insurance; I'd love to be altruistic, but can't afford it. If they would change the laws to at least allow for fair & reasonable compensation for the actual expenses listed above, it would certainly allow more people like myself to donate whatever was needed.
You can get paid for donating sperm because extracting it does not require a painful and potentially dangerous medical procedure, and nobody's life depends on a sperm transplant. People with financial difficulties shouldn't be pressured into undergoing organ or tissue removal to pay their bills. Also, adding the burden of having to pay for a donor will make it so that only the wealthy can afford to buy organs or tissue.
blpme - some insurance companies do pay donor expenses. Also, some medical charities will do the same.
Sperm is messary to start life, not continue it. Bone marrow is necessary to continue life.
Therefore, sperm doesn't abide by the same ethical criteria that bone marrow donation would.
@Elpea, it doesn't sound like it requires a painful and potentially dangerous medical procedure at all.
blpme, I'm pretty sure that the recipient's health plan pays donor expenses.
I'm more than willing to be a bone marrow donor but I have to travel more than two hours to even be tested. Can't they make this easier?
It is easier. Where on earth did you get the info you have to drive 2+hours to be tested? When you sign up for the donor registry, you are sent a swab kit in the mail. You swab your cheek and return it all from the comfort of your home. They test it and then you wait to see if you ever come up as compatible (most people never will).
I would love to be a donor, especially with this new technology, but I don't have health insurance. I would give for free, if I knew that whatever medical costs were incurred were going to be paid for. The only reason I would accept compensation is to have the money paid directly to the medical team to have any medical costs taken care of. I would not want the money to come to me at all.
I can see where it's too much of an inconvenience for her to swab her mouth. And then when you add in the time it takes her to go get the mail...jeez, they want her to do everything.
nosferatu................she didn't say it was an inconvenience to swab her mouth. She said is was an inconvenience to drive two hours. Can you read? You certainly show you can't think.
Please, moron, reread my post. No where did I say she said it. Please, try a reading comprehension class. Also, look up sarcasm in Websters.
Frustrated - there is no cost to the donor except your time. As has been mentioned - the company sends you swabs, a prepaid envelope, and instructions. You only donate when a match is found - and a few other details - and the tab is picked up by the donee and/or their insurance.
For some years you had to go to a clinic to be tested for compatibility. As usual, technology has made people's understanding of requirements obsolete.
nosferatu, my mistake. This is what I was told the last time I inquired about it. I'm thankful I now know differently.
By the way, you sure are a grouch! Are you always this unhappy and so quick to lash out at people? Go away, please.
Consider the case of Mrs. Henrietta Lacks. Not exactly what we're talking about here, but similar in many respects. Decades ago, Mrs. Lacks died at Johns Hopkins Medical Center. It was found that her preserved tissue was different and special in a way never before and never since been found in any other known human. I won't go into the particulars because, while I did understand the differences as I read them in her biography and kinda understand it all even now, I am not particularly well educated and I could not repeat them now. However, the upshot of it all is that the industry, worldwide, has reaped $BILLIONS from her tissue, but her family nothing. And being poor and Black they have gone through some very hard times.
Not so pertinant here. Hela cells were harvested and used for research and this can happen every time we go into hospital for a biopsy or other procedure. The questions that the book poses about compensation is a valid one and the family situation is dreadful, particularly with regard to the billions of $ of revenue that the Hela cells have generated.
However, the issue of an individuals bone marrow donation is a little different. It wont be used to generate a billion dollar industry. It will at best, save one life. For the donor to willingly donate, but have any costs reimbursed, is a fair ask.
When I was tested to join the registry, the testing could only be done during bone marrow "drives" - similar to blood drives. And it generally cost about $60 and required a blood draw. I went to school near a transplant center, and they offered free testing to donors, so I joined then. I'm glad they're no longer charging potential donors for being generous.
I don't see a problem with compensating bone marrow donors in a small way. We already compensate plasma donors, sperm donors, and egg donors (and eggs DON'T regrow, unlike sperm and bone marrow). I'm not saying they should get thousands of dollars like egg donors do, but a couple hundred bucks for the pain and taking time out of your life is reasonable. Altruism only goes so far. Humans are by our very nature a selfish species.
I was contacted three months by the registry as I became a match after signing up 17 years ago. Last week, I completed my donation process via the blood process. The Neupogen drug they gave me the five days leading up to it was uncomfortable but not so much that I was turned off to being a donor. The fact that i could save another human's life was motivation enough. I know i couldn't live with myself if I told them no.
If I got paid for it, I would be a little creeped out. For me, I would have been less attracted to be a donor not more attracted. I think people need more education about bone marrow donation. I don't know why people back out but for me the education I got around the process made me feel comfortable with it.
I did end up taking three sick days, one before, one after and then the day of donation itself. I ended up working at home for an additional two due to the weakness I felt afterwards. I think this is a draw back more, the time away from work. I am lucky I have a job that allows me the flexibility to do this but I think many donors do not. A compensation for time missed from work might be a nice thing for those with no options.
Thanks for being a good person. I'm on the registry, too, but have never matched a recipient. Like you, I would feel weird about taking any money if I were asked to donate. I agree it's reasonable to compensate the donor for time missed from work, travel, and other costs associated with donation.
Brian,
Thank you for shedding light on the process and in doing so, taking away fear!
Brian1990 - There are laws in many states now that REQUIRE the employer to provide time off for bone marrow donation, in fact several states REQUIRE that the time off be PAID. I think if the Federal Government stepped in and made it mandatory across all states, that would resolve a LOT of people backing out... I have heard, and your posting seems to confirm, that several days off are required due to the procedure and the resulting weekness... Like you I believe donors should be compensated their lost time, travel, and other costs associated with the donation.
I donated bone marrow exactly one year ago tomorrow (14 June). My procedure involved the surgical removal of marrow from my hips (1.5 litres of it) and required an overnight hospital stay. I was off from work for 2 days but because I can work from home with access to my computer my employer was happy to allow me the time off with no questions asked. I have not heard the latest status of the 12-year-old boy that received my marrow, but know I would do it again in a heartbeat without hesitation or compensation for my efforts. The BeTheMatch.org registry is an amazing thing and I just wish more people knew how easy the registration process can be. The procedure I had resulted in 2 days of mild back pain with only a week of a sore back. Regardless of compensation, do the right thing and sign-up online at BeTheMatch.org today!
Thank you for being a donor Brian!! Living donors are so important! I'm on the registry too. It was only after my 16-year old sister, Amber, was killed by a drunk driver and became an organ donor that our family became "experts" on donation (the hard way). Education, like you're doing, is the key! It's not painless and it's not a complete breeze, but it's also not the same as having a nosejob! So get out there and get on the registry!! You, like Brian, could save a life!!!!
Your story is important Brian. For some reason the old "needle in the bone method of extraction" was the image I still had for bone marrow donation. This article has been enlightening for that reason alone. I think some publicity of the procedure change would go a long way toward reducing the shortage of donors. Compensation would also help.
I was a donor in 2000, I felt like I had won the lottery! My recipient was 9 and is now 21. He was a stranger at first, but is now part of my family. I would not want to be payed for something like that. It was so rewarding to be able to save someone's life. What a feeling! No amount of money could match the fufillment of being lucky enough to being a donor!
I just registered with Be the Match. It was free and very easy - I signed up online and did the cheek swab process through the mail several weeks ago. I received an email letting me know that the process was complete and that I am now on the registry. I encourage everyone to visit the website and find out more about it. I hope they call me as a match. I would love to be able to help save someone's life. What an honor.
www.bethematch.org
Certainly is a strange system we have that costs us $2.6 Trillion a year--and rising. As a wag once said, "it's a peculiar system that pays a doctor for cutting off your leg." Medicine is big business and we can't have the common folk getting into the act. Perhaps a fund should be established that allows some type of compensation to the donor. There was a case in the 1980's where an oncologist harvested leukemia cells from a patient and then used the cells to develop a treatment all unbeknownst to the patient. Several court cases later, the doc prevailed and the patient received nothing.
A bigger question praytell, if this woman knew she and husband carried a gene that resulted in this condition, why didn't they consider the consequences??? Genetic counseling is available today as never before. If you and your spouse knew you carried the gene for Huntington's why in (God's?) (gods?) name would you have a child????
Not said in cruelty, just a question.
I agree. Had I known in time that cancer was such a big part of one side of my family, I would definitely not have had children.
many people cannot afford the test that will tell them what the risks are if they have a child for them to develope certain disorders. also manytime the testing donw once a child is concived are done after the legal range for termanation. very few people willingly adopt children with health problems which means you raise and love your child and do everything you can to make it work. Or your child ends up in the adoption system and ages out. I'm not saying that fair or right but it is what some people face.
when i was five months pregnant with my son i was told a test came back that he may have down syndrome. his father wasnt in the picture had decided he couldnt handle things. I couldnt afford the test the would give me a firm 100% answer so i had to sit and wait until he was born. it was terrifying, i am thankful everyday that first test was wrong, and that my son is healthy. but if it had gone the other way i dont know what i would have done, i dont think i could have handled raising a child with down sydrome without help, but i also dont think i could have given my child up.
this woman probably had no idea her twins would also have the condition her older daughter had. she is probably terrified everyday of what will happen to her girls, of what she is going to do.
while i think pay them directly will lead to a system where only the wealthy can afford donors over time, i do think offerring medical care coverage for the proceedure and compensation for time off work is very fair. i think charities could be developed that take care of this for the family. taking the burden off the state, family and hospital. i'm positive there are many people out there who would gladly donate a few dollars if they knew it would help make sure someone received a life saving donation of bone marrow.
She certainly knew after she had the first child, so why go and have the twins? It's a very selfish risk to take.
There was a 6-year spread between children, so the family probably knew before the second pregnancy. Some genetic disorders are a sure thing after one appearance, and some might be rare to repeat. But I am in agreement - if I knew about an incurable blood disorder in the family genes, I would not risk it again. Sterilization is fairly cheap and less risky than another pregnancy.
because the first child has it doesn't mean that the others will.
If you consider two healthy parents with a recessive gene,
the chances of a child developing a condition from that recessive gene is 25%.
on average out of 4, 1 will be healthy, 2 will be carriers, and on will have the disability. BTW, identical twins count as one child since the come from the same egg-sperm union.
so essentially she was unlucky to get the losing 25% in both pregnancies.
She had no way of knowing that the twins would have the disease. Usually when both parents carry a resesive gene, the chances that a child will be born with the disease are 1 in 4. So there was a chance that any other children she had could have the disease, but it was not definite.
I love the judgment! Here's what I found on Wikipedia:
So no, they didn't "know" anything. You can arm yourself with all sorts of inforamtion, but at the end of the day, everyone has to make their decisions based on their comfort level with the risks. It is also entirely possible that they didn't know their older daughter was sick before having the twins. It said the median age of onset was 7 and the older daughter is around 6 years older than the twins. Are you as good as ruling your own life as you are for other people?
So why is it ok to be paid to sell blood plasma, which is not an organ, but not ok to be paid to sell bone marrow...which also is not an organ.
actually, technically, bone marrow is an organ, just like your skin is an organ.
The contention is that since it regenerates quickly, should it be treated like non-regenerating organs, or like blood products.
no, technically bone marrow is not an organ.
Bottom line: altruism is a very unreliable motive...the profit motive works like a charm.
With this new method; couldn't the doner just say they were giving blood. Doner can't control what they do with it.
The new method requires taking a special medication for some time before the donation to trigger marrow production (some side effects.) Then you stay hooked up to the machine for several hours. Similar to dialysis, blood is removed and the marrow cells are filtered out. The blood is returned to the donor (so you don't...you know - die.) Like any procedure that breaks the skin, there is some danger of infection.
It is a little more than a blood draw, but milder than the hip-bone suckage.
I just posted about a new FDA approved clinical trial with bone marrow and it is basically one that boosts the immune system to fight cancer and it worked with rats so I do hope it is a success and I am surprised there has not been more media coverage of the trial as this could be huge with the documentation and studies based on Wake Forest studies and we know they grow organs there as well.
http://ducknetweb.blogspot.com/2012/06/fda-approves-new-clinical-trial-for.html
A woman can donate her eggs for money and a man his sperm - anyone can donate blood - these things regenerate and so this is a very different issue than selling one's organs. There is always a possibility for fraud and abuse but the necessity for a pool of life saving marrow is like the need for a pool of life saving blood. The real issue here is that we need to get both the government and religious institutions out of the medical ethics debate.
isiscat..are you sure eggs and sperm regenerate?
Of course they do, how else would men continue to masturbate and women continue to have children? With eggs, it's a longer and more complicated process, but it's not like each man/woman are pre-designated a specific amount of sperm and eggs at birth and that's it.
Actually women do have a pre-designated number of eggs (it's a lot, but you are born with all you will ever have). Sorry. Each month some number of them (usually one, sometimes more) is released (assuming there isn't something hormonal interfering with that process), but when they are gone, they are gone. Donating eggs requires taking medication to cause a lot to be released at once which are then collected. BTW, sperm isn't a requirement for masturbation. Semen is only about 3 percent sperm and even semen isn't a requirement for masturbation, it is only the tangible result.
Ryan,
Go read a medical journal.. Sperm does regenerate, but women are only born with so many eggs in their ovaries. Hense why women go through menstruation.
Eggs do NOT regenerate. Sperm does.
No, sperm isn't required for masturbation, but it's still present in most incidents of it.
Ryan, it seems no one else here is going to correct this - female babies ARE born with all the eggs they are ever going to have. Eggs don't regenerate. Sperm just keeps on being made, which is why Picasso could still father a child in his 90's.
Females are born with all the eggs they will ever have, a total of several thousand. The eggs are not mature, but each month after puberty one, or more, will mature and become available for fertilization.
Long delay before this posted. Thanks to everyone else who is providing basic sex ed here too.
This is obviously a complicated issue. Payment would increase donations. However, allowing payment creates an issue already raised here, namely that the highest bidder, the person with the most money is the person that will prevail. Organ donation payments are illegal specifically to insure that everyone has an equal shot at an organ with the primary determining factor being health, not wealth, and to insure that lower income brackets are not unfairly taken advantage of as donors since they would have the greatest need for the money.
Banning payments, also prevents donors from trying to take advantage of critically ill patients by blackmailing recipients into ever higher payments once they are matched.
On the opposite side of the coin, you have the fact that the new bone marrow procedure in many ways resembles the procedure for collecting platelets. Under current laws platelet donors can be compensanted. In that case the donation is not for a specific individual so there are obvious differences. However, it shows that a payment process can work particularly for donations that take longer and are more physically taxing.
As I see it the primary issue, is finding a way to allow compensation without allowing the compensation to spiral out of control, and to protect both the donor and the recipient. That issue must be addressed in terms far more explicit than what is discussed in this article for this plan to be viable in the long term.
Not if you make a flat rate payment. This is just like donating blood platelets which many people do every week and are paid for. The process is the same, why should there not be payment for your time and the invasiveness of the process?
Anna Lee,
I don't agree that the highest bidder wins in this situation. Matching recipients with donors is very difficult and it seems unlikely a donor match for one will fit numerous others (if any at all). However, I can envision many more people being screened as a result of a large inducement. It would also not stretch my imagination to think that wealthy recipients would show their gratitude by contributing to a trust fund for compensation of future donors. Who wins in that scenario? The less fortunate of course. Keeping the process anonymous eliminates the blackmail angle.
The Apheresis collection is EXTREMELY painful for about 4 days before and after the collection due to the medication to kick the production into high gear. So it is not like going into a collection center on your lunch break and sticking a needle in your arm. It takes regular injections for a week leading up to the collection( mine were in the belly which really sucked).
I think that the donor should receive a set amount for a week or two off work (same amount for all, generous enough that the average person wouldnt suffer any hardship for loss of wage) a stipend for additional expenses, travel etc. Legislation which covers the donors rights to take the required time off work with no penalty. Why not? There should also be a LOT more public education about what is required from the donor. I think that educating the public about the process, and having an nationwide ad campaign showing some of the fortunate recipients, would increase the donor list. I for one didn't know that there were more ways than one to extract bone marrow until today.
you have no rights to other peoples body parts, so no equality needed. there will always be people who would gladly give up a body part to save a life regardless of compensation or not but do not expect everyone to do the same. you have no rights over my life decisions, neither does anyone else but me.
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.
I guess they were wrong because these two little girls that still need a donor are white and no match has been found. You might be a match.
Blood is blood. Why would anybody be concerned about the race of the donor?
Yes, pugface, blood is blood. But marrow cells are not blood and genetic DNA is a factor in matching a donor to a recipient.
pugface - you're right, blood is blood but your blood contains lots of different things, such as antigens (like what makes your blood type A, B), that are more common in some races than others (ie Duffy antigens, more common in whites (49%) than blacks(1%) If you are given blood that has an antigen that you don't have, your body thinks of it as a foreign object and makes antibodies to attack it and kill it, resulting in a transfusion reaction that could potentially kill you.
Before blood is given to a person, a cross match is performed to make sure that the patient won't react to any of the donor's antigens. You can't just match blood type (A, B, O, AB) and Rh type (pos or neg).
Let me get this right!!! They can pay you for blood in most places but not bone marrow. Can anyone tell me where to difference might be!
Only commercial blood centers pay for blood/plasma/platelets; the Red Cross Blood Banks do not pay for any of those things(except juice and cookies.)
The main difference is that marrow is an organ thus falls under organ donation laws, while blood isn't.
Second, blood only requires a type match; thus there are millions of people that could donate for a particular type. Marrow like other organ transplants has a genetic compatibility component, so the number of compatible donors drops to hundreds. this give rise to the possibility of "blackmailing" the recipient.
Money rules the world. Saving some ones life should make a person feel like they owned the world. Think of the friendship that can be created. A friend is more valuable than all the money in the world. As I said money rules the world.
it should be for free, if they do not pay donors.
How much does this Bone Marrow Company charge the patient that get the bone marrow they provide to them? If you look at it this way they will not be making as much money as they do now. There will be more bone marrow and they can't chargew as much for it, LIKE THEY DO NOW!!! It's all about who gets the money, don't let then lie to you!!!!!!!!
The National Bone Marrow Donor Program is a Non-Profit organization and do not charge for matching donors and precipitants. The only charges are by the medical professionals for the procedures just like any other operation.
There is no cost to the donor. It is covered by the recipient's insurance.
I am an anonymous bone marrow donor (we actually did stem cell instead of bone marrow at the last minute). I donated when I was 20 years old- all i knew what that my recipient was a 46 year old male with Non-Hodjkins Lymphoma- all he knew was that I was a 20 year old female. Unfortunately, my recipient didn't survive; however, I have since met his family and remain in touch.
If more donors would step forward in the event that compensation were provided, then great. I disagree with the belief that compensated donors may disclose health of behavioral history- even if that is the case, the NUMEROUS tests that one undergoes to become a donor would be enough to weed those people out. I initially had a full blood work panel done upon agreeing to donate and then again right before the donation (along with an EKG and other tests to insure that the donation would be be harmful to me). I was reimbursed for all travel and expenses that I incurred through out the process.
I was very young when I donated, and got very sick form the neupogen becuase of my age (I already had a lot of bone marrow still so the neupogen increase my levels so much that I was very neauseous and in a lot of pain from the over production )but it was 5 days (really only 2 or 3 that I felt awful) but it was limited in comparison to the sickness that my recipient was feeling. I think it is important to eliminate the fear of donating by letting potential donors know that most donations (which are stem-cell donations as the article states) are relatively painless. Very rarely are bone marrow donations done because the stem cell is just as effective and a much easier donation for the recipient and donor.
I have done both types and much prefer the actual bone marrow.
I would just like to say my hat is off to both of you!
Organ donors should be compensated in the form of several hundred dollars towards the cost of their final expenses. I think that offering a small sum of money would largely increase the amount of cadaver donors, without compromising the integrity of the donor program.
Most expenses are completely covered and there are non-profit organizations that will help with non-covered costs like gas to get to appointments and missed work for a living donor. I am giving a kidney and there will be no expense to my wallet at all.
engoy dialisis every other day . important you know possible side efeckts . to "donation" yes that is for the rest of your life
yep. i think this is bull @!$%#, if im going to give a peice of my body to a stanger, i will receive compensation. i refuse to give my body aprts to starngers because they feel they are obligated 2 it
Luckily, I bet no one wants any part of any part of your body.
Mr Casey Whittington, I don't think that anyone feels like they are obligated to your bone marrow. The idea is that you give it to save someone's life. That someone, would be forever grateful. You have the right to refuse to do this of course. It is your body. But your attitude is all wrong. You seem to feel that strangers are wanting to hunt you down for your marrow. I am sure the only stranger who wants to, is me - after reading your stupid comment.
As much as I hate people who play internet nanny; do you realize what the word obligated means? If someone felt they were obligated to your marrow, they would feel responsible for ensuring your marrow was healthy. However, if they felt entitled to your bone marrow it would mean they felt you have to give it to them. Here's hoping if you ever need a donation of some sort that someone will feel obligated to save your life.
I wonder if Mr Casey Whittington would feel entitled to an organ under those circumstances, or obligated to say "no thanks", after a lifetime of feeling threatened by strangers who need transplants?
everyone saying the doc should get @!$%# is retarded, whos going to do the transplant
We pay people to donate blood platelets that are harvested in a very similar fashion. Why should this be any different?
It's inconvenient to even get tested for bone donation. They only have tests every so many years where I live, and as I recall, the would-be donors had to pay to get on the registry.
I've been donating platelets for 15 years and I have never been compensated. blood banks and hospitals do not pay for the donation of blood products.
Babs - there are now easy ways to be tested for bone-marrow donation.
In a post above:" When you sign up for the donor registry, you are sent a swab kit in the mail. You swab your cheek and return it all from the comfort of your home. They test it and then you wait to see if you ever come up as compatible (most people never will)."
Donors must be between 18 and 60 years of age. They ask for donations when you are added to the registry, in order to keep adding more people. But the donation of money, like the donation of marrow, is voluntary. Check out marrow.org