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Subscribe to RSSA mother with three daughters who have Fanconi anemia sued the federal government for the right to compensate bone marrow donors. The U.S. Attorney General will not pursue the case with the Supreme Court, thus making a lower court's ruling law. That means bone marrow donors may now receive vouchers worth up to $3,000. NBC's Dr. Nancy Snyderman reports.
Certain bone marrow donors could soon be compensated for their life-saving stem cells after federal officials declined to take the matter to the U.S. Supreme Court, allowing a lower court order to become law.
At least one agency, MoreMarrowDonors.org, hopes to begin a pilot program offering up to $3,000 in scholarships, housing vouchers or charity donations -- but not cash -- in exchange for matching donations of marrow cells derived from blood.
“This decision is a total game-changer,” said Jeff Rowes, a senior attorney with the Institute for Justice, which filed the lawsuit three years ago on behalf of cancer victims and others seeking bone marrow matches. “Any donor, any doctor, any patient across the country can use compensation in order to get bone marrow donors.”
That may be the effect of the decision by U.S. Attorney General Eric Holder to forgo a high court review of a 9th U.S. Circuit Court of Appeals ruling that certain kinds of bone marrow donations are exempt from federal rules banning compensation.
Under the ruling, donors who provide marrow cells through a process similar to blood donation, called peripheral blood stem cell apheresis, can be compensated because those cells are no longer regarded as organs or organ parts as defined in the National Organ Transplant Act.
The ruling does not apply, however, to bone marrow obtained through traditional techniques that use a needle to aspirate the cells from the hip.
Although it applies only to nine states covered by the 9th Circuit Court, Rowes expects the effects to be felt nationwide.
The move met with praise from Doreen Flynn, 36, of Lewiston, Maine, the lawsuit’s namesake and the single mother of three daughters with an incurable blood disorder called Fanconi anemia.
She and other plaintiffs had argued that incentives are the best way to broaden the pool of potential donors and to help ensure that those who are matched follow through with the process.
Woman challenges bone marrow donation law in effort to save daughters' lives
Flynn's oldest daughter, Jordan, 13, received a marrow transplant this spring while 7-year-old twins Jorja and Julia may need transplants in the future.
“I’m overwhelmed by the decision and I’m grateful to be part of this case,” said Flynn. “With two kids who still need to go through transplants, this victory means hope for the future. With compensation, that means there is less chance that a potential donor will back out when called upon, which is a very real concern.”
But officials with the National Marrow Donor Program, which maintains a registry of 10 million donors, said they were disappointed that Holder didn’t take the matter to the Supreme Court and worried that the ruling would confuse donors about the issue of compensation.
“Our policy has always been to operate a registry of all volunteers,” said Michael Boo, chief strategy officer with the NMDP and Be the Match. “We will not list donors that have been promised compensation.”
That policy is also adopted by the Health Resources and Services Administration, or HRSA, which regulates bone marrow transplants in the U.S.
Permitting compensated donors would limit the NMDP’s ability to cooperate with international registries in 35 countries, said David Bowman, a HRSA spokesman. About 40 percent of blood stem cell transplants facilitated by the program involve an international patient or donor, he added.
The NMDP also argues that compensation will limit treatment options, divert money from a wider range of patients and, perhaps, decrease the quality of donations. It could skew volunteers’ motivations, perhaps encouraging them to be less than frank when answering the questions vital to ensuring a match, critics have said.
About 10,000 people need bone marrow transplants each year, but only about half receive them, according to the NDMP. The Institute for Justice estimates that about 3,000 die waiting for matches, but NDMP officials say there's no way to know that for sure because many factors affect a patient's death, not just the availability of matching marrow.
Not being listed on the NMDP registry could prove to be a blow to donors hoping to reach the widest range of potential patients, of course.
Rowes acknowledged that compensation could not begin immediately and that many details remain to be worked out.
“I’m not saying that we may not have to fight with HRSA and the registry in the future,” Rowes said. “But they are profoundly mistaken if they think they can use their authority as stewards of information that is the property of the American people to interfere with what the courts have said is the lawful use of that information. We’re not backing down.”
Mother of three Doreen Flynn has filed a lawsuit against the federal government over the National Organ Transplant Act of 1984 which makes it illegal to buy and sell organs, including bone marrow. NBC's Dr. Nancy Snyderman reports.
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I think they should require anyone on Welfare more than 6 months to donate blood.
Anyone on welfare a year and they should donate bone marrow.
If they get pregnant while on welfare, they should donate organs - e.g. kidneys.
I suppose a similar process should be for prisoners as well.
OR they could get jobs OR they could do public sector jobs such as clean highways, build highways, etc.
Great Idea......
That might work for prisoners who have murdered and are being put to death, but what right do you have to decide that someone on welfare has to donate anything? How many people do you know on welfare who are there voluntarily?
We "compensate" degenerates to sit on their lazy a$$es and pump out kids that we will end up "compensating" as well. Why not set up drug screening for welfare recipients and once we have their numbers decreased by about 80%, we can take the money we save there and set up a program to compensate blood, tissue, and bone marrow donors. At least these people are saving lives and doing some good!
I think taking someone's organs, against their will, is really kind of not what we're talking about here. The point is that your organs belong to you, just as theirs belong to them. They have a right to keep them, whether they are on welfare or not. Just as you have a right to donate or to sell an organ...it belongs to you...not the state, not the doctors, and not the hospitals.
OK People read the story! You can still NOT be compensated for actual bone marrow taken in a more invasive procedure. You can however be paid for a newer technique that consists of giving blood. Back in the hippie college days of my youth blood banks paid $12 for a blood donation. The new technique works for MOST patients ,some however will still need the bone marrow. It should save a lot of lives.
Hey, EVERYBODY else in the donation process gets paid, so why not the donor. I know I've had a transplant and seen the bills. The DONOR is the only one not paid in this whole process.The surgeons getting the transplant, the surgeon inputting the transplant. All the nurses, labs, the head of the registries....HELLO...There are so many people waiting and so many people in need, particularly in this economy....WHY NOT?????
Where do I sign up? I need the cash!!
Bone marrow donors getting paid? Another example of how to drive up runaway health care costs.
On the contrary...most people do donate out of a sense of caring. i think it would begin to drive costs down when researchers and doctors and hospitals actually got cut out of the monetary aspects of the donation.
Donating bone marrow is not just like giving blood. There is bone marrow and then there is donating blood stem cells which is kinda like giving blood but not exactly the same. Both require a huge commitment from a person so I don't understand how anyone can think that asking for compensation is wrong. To donate bone marrow you are put under and get a needle in your back. You can have side effects such as back pain not to mention needing to take time off work. So, although you are compensated for the travel and the procedure, you have to be able to take time off work. So, if you work somewhere with limited or no paid time off, this isn't an option.
For someone like me who already has back pain and has been told by the red cross that I can't give blood due to my tiny veins- my veins would collapse under the procedure- I can't participate in this anyway. I think it is noble that there are those that can do this and will do so with no compensation other than having the procedure and travel expenses paid. But, there are those who are working with no paid time off and no health insurance who might want to do this but can't for financial reasons. Reasonable compensation to make up for lost wages is not wrong to ask for.
We already pay for people to give blood and bone marrow now is done by transfusing blood so what is new about this payment? The fear is that an illegal trade in body parts will begin here. Will it? In India they pay for kidneys, in China when a prisoner is executed they harvest everything and send the parts to hospitals where people from the West go to have transplants when they far down on the list in their own countries. Of course, they pay through the nose but they can afford it. China denies it happens.By the way, the usual custom in China was to bill the family for the bullet used in the execution. A gaze of the future?
Why not? Remember the feminazi's chanting "It's my body! It's my body!" over and over again when they want to kill their own babies? So, this IS your body--sell or buy what you can. At least this is voluntary. In slave states such as Red China, American's and other foreigners go there for 'transplant tourism.' They are not alone in harvesting organs involuntarily for profit. In fact, a depraved and godless state such as Red China would probably go out and find a match and kill him just for you if you paid in advance and they could find a match.
With compensation for donors, whether it be blood, marrow, or body parts, would open a can of worms. Regulations should be put in place, allowing family to donate to family, or maybe really close friends.
I do have a problem with Mrs. Flynn having additional children to save her other children, especially since the new child has the same disease. All she did was compound the problem. That should be criminal.
Add that to women who have multiple children so they can get more welfare. That should be criminal as well. Welfare should be limited to a time period, and not made a life choice by s-l-u-t-s who want a free ride. Most of the time, they don't even love their kids. To them, having children for money is their job.
No perfect solution here, but don't damn a Mom with a heavenly purpose. Start contacting your congressmen to change the welfare laws before we condemn Mrs. Flynn and her honorable intentions.
God bless!
Okay... several things...
I was lucky enough to get matched up with a woman suffering from leukemia and donated PBSC's to her.
Donating bone marrow is not the same as donating PBSC's. For anyone saying it's basically donating blood, it's not. You have months of screening and extensive physical testing, 21 shots over the course of a week, and side effects from these shots such as fatigue, insomnia, aches in your bones, and potential allergic reactions. I had just such a reaction. Never got that donating blood.
This covers PBSC's, not marrow. Nobody taps a drill into your back. You sit on an apheresis machine for 7+ hours with a needle in your elbow and your hand. Not pleasant, but not painful.
People who don't have great insurance don't get this procedure. I had over a dozen tests done at one of the countrys best medical facilities, in-house nursing, and a private shuttle service take me back and forth from the facility.
You don't just sign up and get this. Odds are less than one in 8 million you're the best match for a patient. 1 in 8,000,000.
As far as compensation, I think if you're lucky enough to be a best match, after everything you've gone through to that point, $3,000 won't swing you one way or another.
If people really want an increase in donors and participation, increase the opportunites for people to get swabbed and enter the database. I've had two chances in my life to get swabbed, and I took the first one. Organize a drive, find one, or find someone who'll do either for you. It's a numbers game, not a dollars game. Spread awareness and you won't need incentive.
I "donate" plasma regularly (sell it, really). Make about $50/week.
I'd TOTALLY donate bone marrow for $3000. How often can I do it safely?
Heck I'd do it for $1000 cash instead of $3000 in vouchers.
You can do it about once every 18 months. The process takes about 4 months, and odds are 1 in 8,000,000 you'll be a match to donate.
If I thought it would benefit my family after my passing, I would donate everything...except for my pinky toe, that the only part my wife says she likes (lol)...
So...where does the funding come from for the 3k coupon?
International non-profits, such as Geramy's DKMS, are the only organizations funding matching and testing. It'd have to come from either US-based non-profits or private insurers under strict federal regulation. I don't see this going well.
I gave bone marrow through the National Bone Marrow Registration over 13 years ago to a great cancer survivor. I didn't ask for anything in return! Why do you think that giving coupons will attract donors? Donors that gives bone marrow just wants to save lifes! If you are doing it for the monetary return you are doing it for the wrong reason. Join the registry and hope you match and save a life!
Tell me when the "reason" mattered to the person who NEEDED the cells...you know, the one in the hospital bed dying...that person there. I'm sure they didn't make out a questionnaire asking the reasons the donor donated before accepting the transplant....
This is why I don't donate blood. The hospital charged my father-in-law $850 per pint for the stuff. They got it for free plus admin costs. How do they justify that?!! If they want my blood they can cut me in on the action!
I gave bone marrow through the National Bone Marrow registry years ago and saved a cancer patients life. I didn't ask for anything in return. We shouldn't be paying people to do the right thing in life!
Hmmm...seems like Everyone else is making Lots of money, Except the donor.
Hey, I apologize for the previous posting. I know someone needs some help, and an Awesome, Wonderful, person is found, and willing to give - of their own self, to others - But does Anyone, in reality, thank this donor, or help them in their own recovery?....
Or is it in the giving, without thanks, that we receive, because it's not about our self, but them...? Hmmm... ; ) Best Thoughts and Wishes to All
I'm humbled by a donor who is named "Anonymous".
If a hospital can receive cash in payment using what I provided for the patient then the medical establishment can pay me cash for what I provide.
"At least one agency, MoreMarrowDonors.org, hopes to begin a pilot program offering up to $3,000 in scholarships, housing vouchers or charity donations -- but not cash -- in exchange for matching donations of marrow cells derived from blood."
If you're gonna pay, why not pay the one who's giving it instead of paying it to someone else who has no say whatsoever in the matter AT ALL? The politically correct machine is running full steam ahead!
I don't think paying some other entity for someone's marrow cells is going to make much of a dent in the supply....
Having a bone marrow disease, and having experienced marrow extraction, I think I can say that this aint exactly like giving blood. It's a little more involved, and painful.
If a little money tips the decision to donate, so be it. It most likely still won't be worth the money, but desperate times...
Great.....now what's next?? People selling organs to make a buck??? Geeze, what next???!!!
jeez..... why not pay? I really don't see the problem with that. GOD has been mentioned alot. Big why???? I don't know but I believe we are suppose to give to others. Is there some kind of limit that I'm not aware of? God gave us brains, compassion, self-will, and a bunch of other stuff. He never dictated how we should help others. God this, God that....blah blah blah. Just help your fellow man and don't make excuses. Let them stick a needle in your arm and save another human being. No big deal. Let's just keep to the point.
When you donate the doctors and hospital make money from it so why not the donor.
I am already registered to be a bone marrow donor anonymously. I signed up in the name of a friend who was diagnosed with leukemia, he needed a marrow transplant and I felt that if enough people registered perhaps some good karma would go his way. My husband also registered the same day I did. A few months after I registered my friend received a life saving transplant from an anonymous donor. I am glad I registered and even though I haven't been called yet I would gladly step up and donate to save someone's life. I also would not say no to getting a scholarship as a thank you for going through that pain. I agree with some other posters who have stated that it is not a fair system that the recipient of the organ is charged hugely, the insurance companies compensate the doctors at a ridiculous rate yet the person who is giving of themselves gets nothing? I hardly think that a $3000 compensation is going to put marrow out of reach for most americans, truthfully their hospital bills after a transplant would be much higher and 3000 is a drop in the bucket for an insurance company to compensate. Honestly a patient with a n 80/20 plan is going to have a much higher figure to worry about than 3000...
I couldn't help read Lisa's comment after I posted. "What's next organs"? Honey... organ donors don't get any money as we all know. The hospitals get to charge ALL Of IT to the patient receiving it. And it was DONATED!!! Is it just me? Or does anyone else see a problem with this?