Money for Marrow, Finally
Arya Majumder would have celebrated his 19th birthday last month. Instead he died of cancer in 2010, his condition exacerbated by a scarcity of bone-marrow donors. Arya’s father later recounted how the loss of his only child “took away my very heart and soul, and triggered the collapse of my 23-year-old marriage.”
Other families may be spared the same life-upending sorrow because last week the Department of Health and Human Services withdrew a proposed Obama -era regulation that would have prohibited compensation for bone-marrow donation. About 11,000 ailing Americans are currently searching the national marrow registry, hoping to find a compatible donor. This year at least 3,000 people will die waiting for a transplant. Others, like Arya, must settle for an inexact match, which can cause lifelong health complications or prove fatal.
The odds of finding a stranger with matching marrow markers can be especially daunting for patients of color. One example: 10-year-old Texas girl Gabi Ornelas, diagnosed with acute lymphoblastic leukemia in 2015, urgently needs a marrow transplant but hasn’t found a match because there are too few Hispanic donors.
The bitter irony is that it’s easier than ever to be a donor. Apheresis, a medical breakthrough from the mid-1980s, transformed most marrow extraction into an outpatient procedure. Donors receive a series of injections to boost blood-forming cells, which are then harvested through a six-hour process that’s much like giving plasma.
Apheresis is not pleasant—the injections can cause flu-like symptoms, and it usually takes about a week to fully recover. But the process, now used in 70% of donations, sure beats the old needle-through-bone method. Still, merely 2% of the American population has opted into the registry, and only half of those are ready to donate at any given moment.
Compensation could dramatically boost the number willing to give bone marrow. Nonprofit or third-party involvement could mitigate ethical concerns, refereeing to make sure neither the buyer or seller is exploited, and remuneration could come in the form of a perk, like a scholarship or paid month’s rent, or cash.
Federal policy has long trailed medical progress. The 1984 National Organ Transplant Act prohibited payment for organ donors, and bone marrow was included, though it regenerates like blood, eggs or plasma. Represented by the Institute for Justice in 2012, the mother of three girls suffering from a condition known as Fanconi anemi, which often impairs bone marrow function, won a lawsuit against the federal government to allow compensation.
But the Obama Administration then wrote new rules to recriminalize payment for marrow, and HHS sat on the pending regulation for four years, leaving sick patients and their families in limbo. The regulatory uncertainty deflated the interest of entrepreneurs seeking to invest in much-needed marrow-supply services, as well as of top-tier researchers who wanted to study the effectiveness of compensation.
This regulatory reversal will literally save lives. But the Majumder and Ornelas families would be justified in asking the federal government what took so long.
Appeared in the August 8, 2017, print edition.