All Doreen Gummoe could do was hope. Her daughter Jordan Flynn had been born with Fanconi anemia, a rare inherited blood disorder that destroys bone marrow and makes sufferers highly susceptible to cancer. In spring 2012, when Jordan was 14, doctors found preleukemia cells in her blood. Without an immediate bone marrow transplant, she would likely die within months.
Typically, siblings are the most viable donors, but Jordan’s brothers weren’t matches. In 2005, Gummoe had given birth to twin girls, Julia and Jorja, who also have Fanconi anemia. Someday, they will likely each need transplants as well.
Gummoe, who lives in Lewiston, Maine, turned to the National Marrow Donor Program’s registry, praying to find a willing donor for Jordan in the 2 percent of people who are registered. Sometimes a donor isn’t willing to undergo the procedure, even if he or she is a match. Years ago, transplants required a painful biopsy in the pelvic bone. Today, the most common, and virtually painless, method, apheresis, involves connecting donors to a machine that draws blood, harvests stem cells, and returns the blood, which naturally regenerates the stem cells that have been removed.
“If there were compensation for bone marrow donors, that might put more people in the registry,” says Gummoe. “There’d be a better chance of finding a donor.”
However, according to 1984’s National Organ Transplant Act (NOTA), buying and selling organs, including bone marrow, is illegal. So in 2009—two and a half years before Jordan would need her transplant—Gummoe became the lead plaintiff in a lawsuit filed against the U.S. attorney general to challenge that law.
“It’s legal for people to pay for blood, sperm, and eggs,” argues Jeff Rowes, attorney for Institute for Justice, the nonprofit, public-interest law firm that filed the suit. “Plus, it’s crazy to lump in bone marrow with solid organs, like kidneys, that a donor can’t grow back.”
The government responded that the “statute plainly classifies ‘bone marrow’ as an organ for which compensation is prohibited.” Furthermore, by enacting NOTA into law, Congress took the position that “human body parts should not be viewed as commodities.”
Should it be legal to pay donors for bone marrow? You be the judge.
The government won a motion to dismiss by arguing that Congress had the “discretion” to ban compensation for bone marrow. Rowes took the case to the U.S. Appeals Court. He claimed that in 1984, when transplants were invasive, Congress didn’t consider bone marrow to be blood, which it had decided could be paid for. The court agreed, saying that compensation was permissible. But last October, the Department of Health and Human Services (HHS) filed a notice of intent to change the definition of organ to include the stem cells in question and make compensation illegal again. The notice is under review.
“If they do this, we will sue them,” says Rowes. “And we will beat them.”
Meanwhile, in April 2012, doctors found a match for Jordan through the registry. Now, more than two years post-transplant, she is in good health. Her nine-year-old sister Julia is doing well, but Jorja hasn’t been as lucky—her platelet counts are declining. Her mom expects that the family will eventually need to move forward with a transplant. “If HHS backs down,” Gummoe says, “we might be able to use the ruling to help Jorja.”
Was justice served? Should Doreen Gummoe be allowed to buy marrow for her children? Share your thoughts in the comments.