Ban on bone marrow sales challenged

A tall, blue-eyed blonde with an Ivy League education can command five figures when she sells her eggs to aspiring parents. People who donate sperm or give blood in the name of helping others also may do so for a fee.

But donors of bone marrow, just as naturally replenishable and no longer very painful to extract, risk up to five years in prison if they accept compensation for providing life-saving cells to those stricken with cancer, leukemia or genetic disorders.

More than 3,000 Americans die each year waiting for a suitable marrow donor, say cancer patients and families mounting the first legal challenge to a ban on organ and marrow sales enacted by Congress 27 years ago.

In a case argued before the U.S. 9th Circuit Court of Appeals last week, their attorney said that treating inexhaustible marrow cells like kidneys and livers is irrational, unconstitutional and devastating for those waiting for altruistic strangers to come forward and save their sick children’s lives.

“This is a complex case with complex facts. But this appeal couldn’t be simpler,” said Jeff Rowes, the Institute for Justice lawyer representing a nationwide alliance of people calling for modest compensation to attract more marrow donors.

A 1984 law that bans organ sales categorizes bone marrow and its subparts in with vital organs like kidneys and livers. The plaintiffs want the National Organ Transplant Act struck down or amended to allow the promise of $3,000 in scholarships or housing payments to donors as inducements to draw new registrants to the National Marrow Donor Program.

The government-managed registry already has more than 7 million members, but many joined in donor drives inspired by the plight of someone they have known and are often reluctant to donate to a stranger when contacted years later.

If marrow cells were treated like blood or other regenerative fluids that are legal to sell, more donors would be induced to register and more lives could be saved, Rowes told the court, explaining that medical advances have made marrow donation almost identical to giving blood.

His arguments appeared to sway the judges weighing the lawsuit, brought by a Maine mother with three young daughters afflicted with a potentially fatal genetic disorder, a New Jersey father whose only child died last year for lack of a compatible donor, a Minnesota doctor specializing in bone marrow treatments who is handcuffed by the law, and a California foundation proposing a payment incentive while guarding against the emergence of a black market.

“Instead of getting a felony conviction for it, you would get a gold star,” Senior Circuit Judge Andrew J. Kleinfeld observed approvingly, referring to the image of self-sacrifice and generosity enjoyed by legal donors.

Most marrow is now collected after the donor has been given daily injections to stimulate production of marrow cells and their release into the bloodstream from the spongy tissue inside the bones. The donor’s experience is much like that at a blood bank: tethered to an intravenous collection bag but awake and free to read, listen to music or watch TV.

When Congress enacted the organ sales ban, marrow extraction was a surgical procedure in which a long needle was inserted into the hip bone, leaving bruises and lingering pain. The procedure had more postoperative complications than the new blood-drawing method, known as apheresis.

Protecting the poor from being lured into donating for the money was one reason Congress included marrow in the sales ban, but it was not the sole reason, Justice Department attorney Helen L. Gilbert told the three-judge panel hearing arguments Tuesday.

The sales ban was “just one part of a very large regulatory scheme” aimed at encouraging volunteer donors, Gilbert said. Other government lawyers said in written court filings that Congress also sought to prevent potential donors from extorting money from patients in desperate need of a transplant.

The government argued on technical grounds that none of the plaintiffs had standing to sue and that a court cannot strike down a law that generally serves a legitimate purpose just because it negatively affects some people.

Judge Susan P. Graber seemed troubled by the law’s ban on the sale of bone marrow “or its subparts,” noting that the cells stimulated by the injections appeared to meet that definition.

“Part of the issue is semantics,” Graber said, wondering aloud whether calling marrow cells “baby blood cells” might get around the law’s language. She also observed that technological advancements could change the need for certain kinds of regulation.

A ruling in the case, Flynn vs. Holder, may be several months away.

Among the plaintiffs is the California nonprofit MoreMarrowDonors.org, which proposes a fundraising project to finance what would still be anonymous donations arranged by the registry managers. The organization has a $25,000 grant for a pilot project, but the money can’t be spent without violating the law.

Lead plaintiff Doreen Flynn, a single mother of five from Lewiston, Maine, said in court documents that she wants a broader field of potential donors for her 13-year-old and twin 7-year-old daughters, who will need marrow transplants to counter the deadly effects of the genetic disorder Fanconi anemia.

It’s already too late to save the life of Kumud Majumder’s son, Arya, who died last year at age 11 because a suitable donor couldn’t be found.

“Why not offer a scholarship to encourage young people in the prime of their health to register?” asks Majumder, tearing up as he showed a photo of his son holding a surfboard during a Caribbean vacation three months before he died.

A doctor of biological sciences, Majumder said his son’s death was all the more difficult because he understood the painful physiology of the toxic drugs Arya was given to combat the effects of an imperfect marrow match.

“We went through a very stressful time,” Majumder said. He and his wife have since separated, taking turns caring for the cat and dog their son left behind.

carol.williams@latimes.com