By Ami Schmitz and Stacey Naggiar
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
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.
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.
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.