A life-saving deregulation from the Trump admin
Last week, the US Department for Health and Human Services (HHS) scrapped one of the Obama administration's most harmful regulations. The Wall Street Journal Reports:
"...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."
The reform will almost certainly save lives. Lives like Arya's:
"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.”"
Donating bone-marrow used to be a long, painful process, but recent medical advances mean that is no longer the case.
"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 (n.b. compensation for blood plasma is legal in the US).
"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."
"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."
Just 2% of Americans are on the bone-marrow register. And even fewer (by about half) are available to donate at any given time. As Niskanen's Samuel Hammond points out "the average probability that two unrelated persons’ stem cells are compatible is less than one in 10,000. For two randomly selected African Americans, the probability of matching is less than one in 100,000."
And if an African American does find a match on the registry there's an 80% chance that their match is the only one on the register available to do it. A real problem when there's a large drop-out rate for matches (and especially high rates for ethnic minority donors).
From Bone Marrow Mismatch by Samuel Hammond (Niskanen Center)
Usually when demand outstrips supply higher prices incentivise greater production. But the Obama-era rule prevented that from happening by effectively imposing a price ceiling of $0 on bone-marrow.
Hemeos, a healthcare start-up wishing to compensate donors for their bone-marrow, estimate a $2000 payment would be sufficient to increase the follow-through rate of donors to 90%. Smaller payments could be used to incentivise people to sign up to the register in the first place.
Now that the HHS has junked the ban, companies like Hemeos are able to save lives and cut the waiting list.
We should do the same here in the UK, where the chance of BME patients finding a match on the register of volunteer donors prepared to give stem cells is 60%.