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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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If your bone marrow matches that of someone ultra-wealthy in need, you've just won the lottery. In the US, an equal level of healthcare is available to all, especially if you have money.
I'm on a roll with this topic. Equal level of healthcare? Hmmmm. Do all of you realize the donation list is unbelieveable long. Get them to show up and donate is very slim. It's a wonderful thought and idea at the time they think...... but when they are really needed people back out for one reason or another. Sucks if someone only has a few weeks to live. Wouldn't want it over my head!
To All You So-Called Bible Whumpers, You Jimmy Swaggart, Oral Roberts, Billy Graham, Jim & Tammy Fay Baker, and others like you, who sell religion for profit and scam the public for millions of dollars, Shut The Hell Up!
There's nothing immoral in donating, blood, plasma, bone marrow, organs for cash compensation.
For those of you who don't agree, you probably have loads of cash at home, to buy your way towards anything in this world, so shut the hell up.
You got 12-13 million Americans out of work, losing their homes, savings, vehicles, destruction of family domains, and you think donating bone marrow, etc for needed cash, to pay bills is wrong?
Get The Hell Out Of Dodge, you ignorant jackasses.
Not everyone gets $10- $30 million, to leave jobs, before their contracts are up, Conan O'brien, Ann Curry.
Not everyone can spend $3 million on their Daughter's wedding, like the Clintons.
Not everyone gets $25 million, a year, to play baseball like Arod.
Don't try to mix, saving people's lives by donating for small amounts of money, with the multi-billions of dollars made thru sales, to the public by greedy Drug companies.
Dr Hawkeye Pierce, Mash 4077, DMZ, Korea
Sorry but I think this was a bad decision. I know why the mother sued for this and if my child was the sick on and I thought this would help, then I would fight as hard as she did too. However, now that people CAN be compensated, they WILL be. Which means when a poor person needs marrow and a rich person does, the rich person will get help and the poor person will die.
Truthfully, I think donors should be given money to pay for the procedure and their time off work and that's it.
But not with OBAMACARE. Under OBAMACARE we will all be treated equally. Isn't that right? Someone please tell me that it is right because otherwise that means that everything else that Obama said was a lie too. :(
Ok it can work this way. Develop a repository, a data base if you will, of people willing to donate bone marrow. You can make it a world wide thing. Take the needed samples to type the individual. Place them on the list. When someone needs a transplant they go down the list and contact the person they match. They are brought in, sample is taken and transplant happens. If all goes well and the intended goal is reached the person who donated that sample will get compensation. Done this way I don't see a problem. You are being sampled just like having your finger prints in a data base. You have no idea when, or how often you will be called. I think they should be compensated because it is a PAINFUL process.
I looked at quite a few definitions for 'donations'; didn't find anywhere where it is defined as being 'compensated for'. Contributor, patron, benefactor, supporter yes; compensated no...
Frankly, I think it's about time... but I also think that organ donors should be compensated. Sorry if you disagree. Have you seen a hospital bill for an organ transplant? Although the hospital and doctor do not actually bill you for the "organ" they bill you for EVERYTHING else. Tens of thousands of dollars spent on transport, ice, the cooler... all billed to YOU, the recipient, at a SUBSTANTIAL mark up. And you are going to try to tell me the hospital provides this organ to you out of the goodness of their heart?? WAKE UP! The ONLY entity not making a profit out of this whole things is the donor & recipient. Every last little person along the way is cleaning up. So pull your heads out. If the donor wants to give their kidney or bone marrow to the medical establishment free of charge, then good for them, but I think they should be compensated just like everyone else.
If someone wants to donate then they can still donate, but if they want to be compensated for donating then they should be able to be compensated for their donation.
People have been selling their blood for years, why not their bone marrow?
If people are compensated for donating their marrow, than what is going to happen when people want to be compensated for organs. There is already a shortage to begin with by adding the thought of money to compensate there is a good chance that even less organs will be available due to people wanting money for once and still is considered the ultimate gift. I am an organ recipient so I understand all that goes along with transplantation, I thank God everyday for my donor and the gift his family gave me, LIFE.
Most of the time, BMT donations do not involve the invasive procedure of harvesting marrow from the donor's hip bone. Most donations involve peripheral blood stem cells, which are removed in a procedure that's just like giving blood. Visit www.marrow.org for more information.
yeah nice they found another way, the hip donation is beyond painfull and hurts for a while afterwards unless you family pony up around 100k for that nightmare.
Just wondering why this family chose to have another child(ren) when the first daughter was diagnosed with Franconi anemia. Genetic counseling would help the parents understand the rate of occurence in subsequent offspring, something to consider when deciding whether to bring another child into the world. I guess that possibly the older daughter was not diagnosed until after the twins were conceived? I don't really know alot about this disease....maybe the bone marrow transplant is a "cure" and otherwise the life expectancy and quality of life is normal?
Why should doctors, pharmaceutical companies and hospitals and nursing homes get all of the money. Talk about the cost of "welfare",...this is senseless.
Hmmm. People getting paid for being 'donors'. Well, why not? The drug companies make billions but I wonder if getting paid will open the 'donors' up to liability should something go wrong with the 'donation'? After all, the drug companies are liable if something goes wrong with the products.
Mr. Boo at the bone marrow registry says they won't use people who get compensated.
What right do you have Mr. Boo to play God like Mr. Holder tries to do.
If us cancer patients need bone marrow transplants the donors should be compensated if need be.
Too many people die on the waiting list due to you policy of no compensation.
When I need my bone marrow transplant I'll not even waste my time getting on the USA waiting list.
I'll take my money and go to India or South America and have mine done where they don't have backwards policies like yours.
When you and Eric Holder get cancer and need a life saving bone marrow transplant then you will understand.
For now it seems to be a political, business decision for you.
Shame on you and all others that are blocking compensation for bone marrow donors.
Interesting comments. I fully support being compensated for the pain and possible complications which could result from donating human tissue. Everyone else gets money from the BM why shouldn't the donor? Doesn't the farmer get paid for what he produces or should we expect him to provide food to middle men who make their living off of his harvest for no compensation? As far as being one of God's creations as we all are there is nothing in the bible that says anything against donating human tissue from one to another. God gave you your body for your temporary stay on earth. It's a tent, not permanent housing. If God did not want people to donate body tissue then any transplant would fail but of course they don't because it was part of His plan. Whether you donate or you do not God already knows it.
All religions are made by man. Religious leaders create the way that the followers will worship God. I think that the Catholic religion has pushed more people away from God than brought them to Him. They created a power system which was abused. Right from the get go man was not meant to be alone but to have a woman as a helpmate. So if priests and nuns cannot marry and must abstain from sex that goes against the very basic nature that God gave man to "be fruitful and to multiply". That is why there are so many sexual problems with the priests. God did not create the Catholic religion. He did not create the hierarchy of the Catholic religion. If you are disenchanted with God because of Catholicism then learn more about God and Jesus Christ in another religion. Don't turn your focus from God because of man. That's as foolish as looking to elected officials for financial help or fairness from a government which is neither fiscally responsible and completely unfair.
I have been on the registry for 10+ years. Have never been contacted. Would freely save a life! Most people I know do NOT want/need compensation to save a life!
I think I would need more information on the process before I would know if I would do it. Last time I heard anything about it, it used to be very painful and risky. Now it has changed. I think that is what they need to let people know because I know I am not the only one that didn't know it has changed. If it is really like blood donation, $20.00 should be enough. Also, what type of things effect the quality of the donation? If you offer money, you are likely to get a lot of drug addicts and alcoholics and stuff trying to do it, so does that matter? As far as a lot of the other donations that actually require surgery, they should be really paid the big bucks. There are a lot of cost involved in that sort of thing, time off work and not to mention pain and suffering.
lol 20 bucks wont come close to covering it, thats not even going to cover gas to and from. i expect at least the same compensation as i get at my job. 20 bucks is a joke. even plasma donations pay more that that.
organs are not "paid for" the harvesting procedure and transport is piad by the insurance companies. That means to doctors, operating facilities and emergency transportation to the recipient. This is the fairest way. When my bride had her transplant their was a welfare mother in the bed next to her. She paid nothing, I still had some $5000 to cover.
just a comment, what would the warranty be? 30 days, 60? 1 year? Then could I get my money back?
?? Bride or Organ?? (lol)...i hope she is doing well
id donate but not unless i get paid, just like id sell part of my liver but id expect substantial compensation plus full payment of any and all medical bills related to the procedure both past and future. look at it how you want to consider it payment for time and pain.
To shawn clark 3364730 -
And you, Dear Sir, are just the reason why this law should never have been passed. YOUR time and pain? - You have got to be kidding. Did you ever stop to think about what a transplant patient (leukemia, lymphoma, etc.) goes through with pain and suffering and time? You have no idea... Keep your organs, they are not being given for the right reasons...