By Ami Schmitz and Stacey Naggiar
Rock Center
This is an update to a previous report from June 13, 2012:
UPDATE: Jordan Flynn is doing well ten months after her bone marrow transplant. The 14-year-old has been back at school for a few months and is making the honors list. Her eight-year-old sister Julia is healthy, according to her mother Doreen, but her twin Jorja’s blood counts are dropping. Her doctors say a transplant may be necessary.
Jordan and her two sisters all suffer from Fanconi Anemia, an incurable blood disorder. Their mother, Doreen Flynn, recently waged a high-profile, legal battle to make it possible for bone marrow donors to be compensated. Flynn thinks compensation will help her girls and the 16,000 people searching for bone marrow matches. Doreen and her lawyer, Jeff Rowes of the Institute for Justice, won their court battle. It is now legal for bone marrow donors to receive compensation – not in the form of cash, but rather coupons and goods for as much as $3000.
This compensation would be awarded to donors from a fund. Individuals receiving the bone marrow would not be paying their donors directly. There is one requirement – that the bone marrow is extracted from the patient’s blood, rather than from the hip, which is more painful and time-consuming. In our original report, Debbie Warren donated marrow this way at the University of Pennsylvania for her brother. Today, she says he is doing well.
In the wake of the legal victory, Shaka Mitchell, co-founder of moremarrowdonors.org is developing a pilot program to compensate bone marrow donors. Mitchell is collaborating with researchers, both domestic and international, to determine the incentives for donors and how to distribute them. The compensation could be given in the form of tuition payments, housing allowances or general stipends. The goal is to make sure people who promise to donate actually follow through. Experts say many people who sign up to donate don’t show up if they’re found to be a match with someone. Mitchell says he recently got a call from a gentleman in need of a transplant who had five matches and already three backed out. For this reason, Mitchell’s legal team is exploring ways to get access to the names of matches who decide not to donate. If this can be done in a way that adheres with patient privacy laws, moremarrowdonors.org could offer compensation packages and perhaps save lives. They are currently in the process of raising money that will specifically go into a scholarship fund.
After the jump, read Rock Center’s previous report on Doreen Flynn and her family’s fight.
Previously Published June 13, 2012:
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.
For more on Fanconi Anemia, click here
Rima Abdelkader helped contribute to this report.
Leave a Comment:
The most important link is missing and that is for the Fanconi Anemia Research Fund. One of the few sources that is pursuing research on this topic.
Hi there--I produced the segment and you are absolutely right. We will add that link. Thanks for writing
How is reimbursing bone marrow donors any different from compensating plasma donors ? The latter has been compensated for years!
Val, I agree. I believe bone marrow should be compensated. But for a small monetary amount, such as $100. This will help compensate a donor's time off from work for the few hours during the day it would take for the procedure. In turn, if someone receiving marrow must pay the $100 to receive the marrow, then it will be easy for that person's, insurance to cover or family to raise the $100. Whether from their pockets or raising the money by donating plasma to cover the cost.
It didn't include the link above www. fanconi. org (remove the spaces)
There is a problem with the bone marrow transplant program. I went to the be a match website a couple of years ago. I found out that I am too old to donate anything. I would be more than happy to be a bone marrow donor. I am 62 years old and the donation program stops at the age of 59 or 60. If I were a match, isn't taking my marrow at least a chance for one of these kids to survive. We need to stop getting so politically correct and let people try to save a life. I'll bet if that guy who was on there saying they can not pay people, would take my old bone marrow if his kid needed it.
I'm 62 also and didn't know that. I agree with you that taking our 62 y/o marrow gives someone with a death sentence a chance. If I were dying I would certainly take it.
My doctor is an activist and I have an appointment with him in early April and will talk with him about it. He may know something that can be done.
While I can see why this is frustrating, it is important to understand the reasoning. First of all, many factors affect a bone marrow transplant and how it will affect the patient as well as the donor. In most cases, the donor is barely affected by the donation process. However, the recipient has many risks and it is the doctors and the Bone Marrow registries responsibility to make the transplant as safe as possible.
When my son needed his bone marrow transplant 2-1/2 years ago we were told that the younger the donor was the better chances my son would have. They explained that the older a donor was, the bigger the risk of even more life threatening reactions. Also, the older a donor is the harder it is for their own body to re-grow the cells and for the patients body to grow the new cells as well. This leaves the patient in a longer state of immune suppression and at a higher risk for GVHD due to anti-bodies in the donors marrow.
Other factors included the fewer pregnancies a donor had, the more successful the transplant would be (again due to antibodies).
There are so many factors and while I do think they need to allow older healthy donors to register, I also understand that they are trying to save their limited resources to get the best possible donors on the registry.
Less than 10% of patients searching for a donor will find one. If anything, having donors who have "aged out" of their parameters on a back up list for those who do not have any other matches would be a wise idea. But unless there was some way to pay for the testing of those least likely to be matches, this is not possible. Testing just 1 person just to put them IN the data base is over $100 per potential donor. This is JUST to get their HLA typing done and inputted into the registry. If the registry spends all its resources putting donors in the registry who are likely to never recieve the call to donate, there will be nothing less for the most commonly selected and most successful donors.
I registered with the National Marrow Donor Program (NMDP) 13-years ago at a fundraiser for a friend's sister who needed a transplant. Each year I have updated my contact infomation with the program. I have never once been contacted until last year when I was sent an email by the NMDP saying that I was now too old to be considered as a viable donor. I am 53 years old. I would gladly donate my bone marrow. I would never acccept any compensation.
As a three time marrow/PBSC donor (to an unrelated, unknown recipient), I know a thing or two about donation and the process involved. Preparing to donate is a complex series of tests, counseling, and appointments which involves much more than 'showing up' for the harvest. Shame on Rock Center for making marrow donation appear as easy as giving blood, because it's not.
I oppose compensating donors for their tissue. One donates out of the goodness of soul, not for a housing stipend, scholarships, ect. The thought of compensation is repulsive.
Additionally, why weren't the twins, while still in utero, tested for Fanconi Anemia? It seems irresponsible to go to the expense and risk of growing a new child(ren) to provide stem cells and NOT have them tested for the genetic condition.
I was wondering if there is a cost to the donor. I know at one time, the donor was required to pay and donate. I am hoping that has changed over the years. I was surprised at how many donors actually had the nerve to back out. And, I wonder why there is an age limit on potential donors who are perfectly healthy and take no medication. With bone marrow transplants so easy to give, it would not be any problem for anyone healthy enough to give. I can never understand why age should be an issue. There are a lot of seniors in today's world who are very healthy and sometimes healthier than the younger ones. Age shouldn't be a stipulation.
I registered in 2000 during a DOD Bone Marrow Drive in Virginia. In early 2010 and after a name Change, my Husband and I just came back from House hunting in the USA, we were in Germany at this time and there was a Message on our Answering device to please call and that I was a potential Bone Marrow Match. Of course we called back and they told me what I had to. So they overnight the 1st test kid to me and I tool it Landstuhl Hospital to get the 1st Test done. Not sure if I would be a Match or not. My Husband and I stared the process already just in Case, were supposed to lave Germany in October. And in case I was a Match we probably had to be in the US in July-Aug, we talked to the command and to see if my Husband could be curtailed on short notice and since this was a case not usually for the command they pledge there support in whatever was needed. About 2 weeks maybe less I was contacted again and told that I was a good match and if I was still willing to donated, of course I was and I had to do some more blood work, again they send the Packed this time to Landsthul and again I drove there to get more testes done. I was confirmed a Match and was given the time frame when they needed me to come to DC to donated, well we had to reschedule our closing b/c of the time frame, my Husband curtailed for 2 months. I left Germany in June so I could close on the house 2 weeks before closing the House was taken by the IRS, great so we had to find a new House in less than 2 Weeks with a closing what fits in the Donation Schedule. Our Realtor found us a need house, we put in an Offer they accepted it. 1st hurdle done, so the Hubby is in Germany I am in TX. Get a phone call to let me know that the patient got sick and the collection had to be postponed for a few weeks and that they needed to run more tests again, so they send the packet to the Military Hospital here. So I found my way the Hospital had to register with the Hospital since my Husband was still in Germany and then went to the lap. So now it is July and my Husband is in the US our pets are in a Kennel in Germany till we are in our new House. And again I get a call to have the donation moved for 2 weeks again. Ok no problem, so we talked to the closing Office and they understood so we got the closing moved again. 2 Weeks later we are in DC and start the shots to build stem cells in my body the shots do not hurt and the 1st day I was doing great, they said that if I wanted to do some sightseeing to do it the 1st couple of days after that I would feel tired and oh boy were they right after day 5 I think I was going to the Donation, well here is where my story differs from others, I am a hard stick the red cross turns me down to give blood b/c my veins are not good enough, we told them from the begging but they told us not to worry they reserved the hospital just in case but they never had to send anyone over there, well after they tried several times I thing it was about 6 not sure, they send me over to the hospital and vent in internal jugular vein, my Neck vein. It did not hurt it was just very uncomfortable when they pushed in the line but other than that it was nothing. After it was done they pulled the line out and now after almost 3 years you can only see a very small scare on my Neck, I would do it again if needed, it is a good feeling to help someone.
I understand why people heisted to give especially when money is an issue, if people get paid for it, I would understand it. I still would give mine for free but I do not work at this this time and my Husband has a job where he will get time off and still gets paid the same. He will retire next year so out Income will be less so it maybe will not be as easy to get time off, so if you get some help with repayment of the money you lose b/c you are and your partner are away from work I understand.
Here is the link for the DOD Bone Marrow Program:
dodmarrow.org
I cannot support compensation for donating bone marrow. The article fails to explain how the "fund" is funded. If is the recipient who funds it, what happens if they cannot afford it?
I was on the registry from 1989 to 2009 (I had to be removed due to my own blood disorder). In 1991, I donated marrow from my hip to a man with leukemia. In 1992, a year later, I met him, his wife and his 4-year old son. In October 2012, we celebrated 21 years! His health is declining after 21 years on steroids and anti-rejection drugs, but in that time, he has spent time with is wife, he has seen his toddler grow up, graduate from college, find a dream job and fall in love -- they are getting married in October. Yes, I gave him a gift, but he gave me one as well -- that gift I received is my lottery. It's worth more than any amount of money, and surely makes the $3,000 in parting gifts from this fund laughable.
Over the years, I've spoken to many about donating marrow, of giving hope to the patient and his/her family/friends, and of the gift I received from doing so. I've talked to dozens who were matches and had questions about the procedures. Not one of them said "no". Had the $3,000 from the fund been offered to me, I would have turned it down -- that money would be better spent going back to the registries to get more possible donors on board.
I encourage people daily to get on the registry, and share the letter my recipient wrote me a year after donation -- that letter puts so many things into perspective, and if it encourages one more person to get on a registry, that's one more chance for all those looking for their match.
Being chosen to donate is reward enough to last a lifetime...
Hi guys,, I salute those people whose donating their bone marrows to save lives...those people go to heaven, great article thanks