Undated -- Should people be paid to donate bone marrow?
About 20,000 bone marrow transplants are performed annually in the USA to treat blood disorders such as leukemia and anemia, and in up to 30% of cases, the donor is a relative, usually a sibling.
The remaining transplants use marrow from volunteer donors, who are strangers to the recipients. Worldwide, 14 million potential donors have signed up with bone marrow registries, including 8 million Americans.
Although millions have registered to donate bone marrow, a lawsuit filed in federal court in California argues that too many patients are dying for want of a match. To encourage more prospective donors to sign up, the plaintiffs propose compensating bone marrow donors, a violation of the National Organ Transplant Act, which bans buying donor organs, including bone marrow. Violating the law carries a penalty of up to five years in prison and a $50,000 fine.
The lawsuit, filed in October in California federal court against U.S. Attorney General Eric Holder, argues that the government should not put bone marrow in the same category as solid organs such as kidneys. The government filed a motion to dismiss last month, and there will be a hearing on the motion March 15 in Los Angeles.
Bone marrow - spongy tissue in the center of bones where blood cells and immune system cells are produced - grows back, but kidneys do not, says the Washington, D.C.-based Institute for Justice, which filed the suit. On its site, the institute describes itself as "the nation's premier free-market public interest law firm."
Plaintiffs include a leading bone marrow transplant doctor and the mother of three children who will need a transplant to treat an inherited blood disorder.
A third plaintiff, the California-based moremarrowdonors.org, wants to start a pilot project in which it would give donors $3,000 toward a scholarship, rent or mortgage payment or charitable contribution in their name. Moremarrowdonors.org's non-profit status is pending, but the group is accepting donations earmarked for paying donors.
Critics say financial incentives could lead people to cover up health problems or behaviors that would make them ineligible to donate bone marrow. They worry that paying donors will discourage altruistic people from signing up, possibly leading to an overall decline in prospective donors. And they wonder where it will lead.
"Why not incentivize donating a heart when they're done with it?" says Kenneth Goodman, director of the University of Miami's Bioethics Program. "The challenge to our colleagues at the Institute for Justice: When will you be satisfied? Why not commodify everything?"
Paying for human parts, Goodman says, "is a surrender to values that are not our most noble values."
Because bone marrow produces immune system cells, finding a match is far trickier than with solid donor organs, says Jeffrey Chell, CEO of the National Marrow Donor Program's "Be the Match Registry," which comprises the 8 million Americans who have signed up to donate.
"The kind of matching we have to do is hundreds of millions of times more complex," Chell says. "There are literally more variations possible in the diversity we're looking for than there are people on Earth."
In other words, even if all of the planet's nearly 7 billion people signed up to donate bone marrow, some patients, especially those of mixed race, still might not find a perfect match among them. "Our focus is to continue to look at increasing the diversity," Chell says.
Akiim DeShay, 38, one of the founders of moremarrowdonors.org, is African American. DeShay, who lives in Dallas, received a bone marrow transplant from his only sibling, younger sister Rashaan, after he was diagnosed with leukemia in late 2003.
As a volunteer with the National Marrow Donor Program, DeShay says, "I noticed that black people were the hardest to recruit" to be donors.
"It's pretty much a cultural thing," DeShay says. "A lot of it has to do with the history and the mistrust of the medical system."
He can empathize. Before he got sick, "I never gave blood. I don't know those people. They're not sticking me." But then he needed blood transfusions every day for three weeks while receiving chemotherapy, "and it kept me alive. So I've been on both sides."
Only about 7% of those registered with "Be the Match" are black, and 74% are white. The likelihood of finding at least one potential match for African Americans is 60%, compared with 88% for whites, according to the registry.
Suitable matches don't always end up donating, though. Last summer alone, patients and families from Florida and Utah moved to Minnesota for transplants that fell through at the last minute because the donors backed out, says plaintiff John Wagner, director of bone marrow transplantation at the University of Minnesota.
"Maybe having this compensation wouldn't have changed that," acknowledges Wagner, a pediatrician, who says he gets 1,000 to 2,000 calls, letters and e-mails a month from desperate parents asking him to save their children. "In a way it's sort of an experiment. ... Can't we just ask the question?"
The Institute for Justice says 1,000 Americans die every year because a matching bone marrow donor can't be found. But Chell takes issue with that figure, noting that a lack of a donor isn't the only reason patients don't get a transplant.
"Many patients are referred too late for a transplant to be effective," he says. "Even delays caused by insurance denials can put a patient at high risk." Poor literacy and living far from a transplant center can also block access, he says.
The National Marrow Donor Program can help cover donors' expenses, such as lost wages. Only about one in 20 donors seeks such assistance, says John Miller, director of donor medical services. The need isn't great, he says, because "many employers are very generous in letting their staff participate."
But DeShay says the $3,000 moremarrowdonors.org would like to offer could make the difference between a match who follows through and one who doesn't.
University of Pennsylvania bioethicist Arthur Caplan is skeptical. "It's naive to think that a few thousand dollars is going to move anybody," Caplan says. "Fees have to escalate to 10 times that amount, easily."
It's like drawing blood
Jeff Rowes, the Institute for Justice lawyer who filed the lawsuit, argues that transplanting bone marrow - which, in most cases, can be harvested without surgery and is transfused into recipients like blood - is more like a blood transfusion than a heart or kidney transplant.
Although it's illegal to compensate donors of blood meant for transfusion, Americans are allowed to sell plasma, the fluid part of blood used in making immunoglobulins and other treatments. People who sell plasma earn $20 to $30, according to the Plasma Protein Therapeutics Association.
But research has shown that paid plasma donors have higher rates of infectious diseases than unpaid blood donors, Miller says, suggesting that a similar problem might be seen with paid bone marrow donors. "We really want the safest product for the patient. When you pay people, they potentially have an incentive to not be as straightforward."
A mother's struggle
Until Rowes first contacted her through Facebook, plaintiff Doreen Flynn says, paying bone marrow donors "didn't even cross my mind. I guess I just thought everybody should do it because they were helping to save a life."
Three of Flynn's five children, Jordan, 11, and 5-year-old twins Jorja and Julia, will need bone marrow transplants for the treatment of Fanconi anemia, a rare inherited blood disorder. Flynn, since divorced from the girls' father, says the twins were conceived in the hope that one would be a perfect tissue match for their older sister. Julia is, but, of course, her Fanconi's eliminates her as a donor.
Between school and sports - their mother did nix hockey because the girls bruise so easily - the Flynn sisters lead active lives.
Jordan's doctor already knows of potential bone marrow donors for her, says Flynn, whose family is white. Still, Flynn says, "I have friends who don't have donors."
Without a transplant, the average life expectancy for a child with Fanconi anemia is 14 to 16, Flynn says.
"Jordan is very well aware of her disease," Flynn says. "She knows some of her friends passed away after transplants. She knows some survived transplants. And she's scared. She's already voiced that."
READERS: Would the promise of compensation make you more likely to sign up to donate bone marrow?