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Prospect of compensation could match more bone marrow donors with cancer patients

HHS says bone marrow is not a human organ, opening door to compensating donors and boosting supply

Updated to include additional sources. 

With bone marrow donors in short supply, thousands of cancer patients die every year waiting for a match. A life-saving means of encouraging more donors may soon be at hand.

Last week, the U.S. Department of Health and Human Services withdrew a controversial proposed regulation barring bone marrow donors from receiving payment for their donation.

Under the National Organ Transplant Act of 1984, donating an organ for payment is a crime with punishment ranging from a fine of $50,000 or up to five years in jail. In 2013, the Obama administration proposed a rule expanding the definition of human organs to include bone marrow, which made receiving payment for bone marrow donations illegal under NOTA.

The Institute for Justice, a nonprofit libertarian public interest law firm, has long argued to allow bone marrow donors to get compensation. It even filed a lawsuit in 2009 against U.S. Attorney General Eric Holder. In 2012, the 9th U.S. Circuit Court of Appeals ruled in Flynn v. Holder the most common method for donating bone marrow called apheresis did not fall under NOTA restrictions.

While the Obama administration did not appeal the court’s decision, it did return with the proposed rule a year later, prompting swift condemnation from IJ.

“Under the proposed rule, HHS sought to do something Congress never authorized it to do: define loose cells floating, such as blood stem cells, as a ‘human organ’ when such cells are not in fact a human organ,” Jeff Rowes, a senior attorney with IJ argued in a press release. “Banning compensation for donors would have eliminated the best incentive we have — money — for persuading strangers to work for each other.”

Michele Goodwin, the Chancellor’s Professor of law at the University of California, Irvine and the director of the Center for Biotechnology and Global Health Policy, says public opinion toward donor compensation is changing, but the federal government has yet to catch up to the trend.

She suggested a fear of exploitation might explain the resistance to allow donor compensation.

“The concern is that vulnerable people would sign up for this and vulnerable people would be exploited,” Goodwin explained. “Here’s where the theory has not matched the problem. Bone marrow can save a life. Bone marrow is also regenerative, so it’s not as if when someone donates bone marrow that they have now depleted it all for themselves.”

Goodwin said technology has advanced to reduce the risks involved with bone marrow donations, while also increasing the benefits to those receiving the donation.

“One criticism is that the federal government ends up being overly paternalistic to a certain degree and it ends up hurting more people than it actually helps, at least in this day and age,” Goodwin said.

With 11,000 Americans in desperate need of bone marrow transplants, finding donors is a challenge. According to IJ, only 30 percent of patients who need a bone marrow transplant have a matching donor in their family. The remaining 70 percent must find a match on the national registry, but it takes time to find a matching donor, something patients have in short supply.

“During the past four years, thousands of Americans needlessly died because compensation for bone marrow donors was unavailable,” Rowes said. “We aim to change that.”

By withdrawing the proposed rule, HHS opens the door for organizations to provide financial incentives to encourage more people to become bone marrow donors.

Organizations don’t have to offer direct cash payment either, as Goodwin points to other ways in which donors can be compensated like with mortgage subsidies, tax write-offs, or help with college tuition.

MoreMarrowDonors, a California based nonprofit, plans to compensate donors with a $3,000 scholarship, housing allowance, or a charitable donation of the donor’s choice if they donate bone marrow. With the rule gone, MoreMarrowDonors and others like them can move forward with plans to ease the donor shortage.

“[R]esearchers and entrepreneurs are free to create programs that are sure to save thousands of lives,” Rowes said.

While not commenting on the specific move by HHS repealing the proposed rule, in a statement the North Carolina Medical Society said it continues supporting “efforts to encourage citizens to consider becoming bone marrow donors.”