Update on compensation for bone marrow donors

Frank McCormick emails about a new movie concerning the 9th Circuit court case which ruled that it might be legal to compensate certain kind of bone marrow/blood stem-cell donors, and the subsequent administrative battle to prevent that: Film inspired by Lewiston mom premieres

"A mission to help her three young daughters — Jordan, Julia and Jorja Flynn — stay healthy despite their Fanconi anemia, a rare genetic blood disorder that destroyed their bone marrow and made them extremely susceptible to cancer.

She's fighting to increase America's pool of bone-marrow donors by getting the federal government to allow some donors to be paid — a significant change she believed would help both donors and those in need, like her daughters.

Four years later, the Lewiston mom is still fighting, both for her daughters' health and against the federal government. But she's getting attention for it in a new way.

Today, a short film inspired by her battles will premiere at the Maine International Film Festival in Waterville.

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"Hoping to help donors ease the financial burden of donation and give them an incentive to see the process through, Gummoe became lead plaintiff in a lawsuit spearheaded by the Institute for Justice.

For years, federal law has prohibited bone-marrow donors — and organ donors — from being compensated. The suit argued that advances in medicine made bone-marrow donation more like plasma donation, which can be compensated under the law, than to kidney donation, which cannot.

In traditional bone-marrow harvesting, doctors stick a needle through a hip bone and remove bone marrow. The alternative method, peripheral blood stem cell donation, is now used most of the time. In stem cell donation, donors receive injections to increase the production of blood-forming stem cells that are then siphoned out of their blood in a process similar to dialysis.

The lawsuit was successful: The 9th Circuit Court of Appeals ruled that the new form of bone-marrow donation did not fall under the category of organ donation as the law was written and could be compensated. At least one nonprofit was planning a pilot program to see how compensation — a $3,000 housing allowance, scholarship or charity donation — might boost bone-marrow donation.

But in 2013, the U.S. Department of Health and Human Services proposed a new rule that would explicitly include peripheral blood stem cell donation in the definition of organ donation. With that looming for nearly three years, no group has felt comfortable moving forward with a pilot program to compensate donors.

"If they were to raise money and start pursuing this research and then the department issued its rule and blocked it, it would be a waste of their time and resources, which are precious," Kramer said. "In good faith, they couldn't move forward."

The department has until the end of this year to either move forward to prohibit bone-marrow donors from being compensated or drop the issue. A Health and Human Services spokesman said Wednesday that the department was "working toward being responsive to this deadline."

The department has said a ban on compensation would help ensure that, among other things, donors aren't coerced or exploited.

Gummoe and the Institute for Justice believe a ban only ensures that there aren't enough people willing to donate.  "