As Dr.
Carlos Zayas battled an aggressive lymphoma, the good news
came that a donor had been identified as an almost perfect
match for a bone marrow transplant.
And then
the bad news: The anonymous donor didn’t want to go through
with the procedure.
A
colleague suggested payment might convince this stranger
otherwise. But Zayas couldn’t fathom it.
"If
you want to save a life, it should come from your heart, not
from your pocket," said Zayas, who leads the kidney and
pancreas transplant program at Piedmont Hospital in Atlanta.
The
pocket may have more power now that a federal court declared
it legal to pay people for body tissue needed for certain
common bone marrow transplants, adding fuel to the ongoing
debate about the ethics, and effectiveness, of compensation
for body parts.
Though
payment for bone marrow and other organs is banned under the
1984 National Organ Transplant Act, the Dec. 1 ruling from the
9th Circuit Court of Appeals based in California exempted a
technique that doesn’t touch the bone marrow itself, but
rather removes relevant stem cells from the bloodstream in a
process similar to plasma donation, for which payment is
allowed.
Although
some bone marrow transplants require putting a donor under
anesthesia and inserting a long, hollow needle into the pelvic
bone, three-quarters of marrow donations use a less invasive
method to remove peripheral blood stem cells (PBSC): blood is
drawn from one arm, cycles through an apheresis machine that
separates out the cells to be used in the transplant, and is
returned to the donor’s body through the other arm. The
donor’s stem cells are grafted into the recipient through a
catheter in a chest vein. The donor regenerates his or her own
cells within a few weeks.
Jeff
Rowes, lead counsel in the lawsuit against the government,
said the ruling allows for experimentation in a system in
which, he estimates, 2,000 to 3,000 people die annually from
not getting a needed marrow transplant.
"We
want to find out if compensation works," said Rowes,
senior attorney at the Institute for Justice, a libertarian
public interest law firm.
Attorney
General Eric Holder has until Feb. 29 to petition the Supreme
Court to take the case. If he doesn’t, donors could be paid
for PBSC, but not for traditional techniques requiring marrow
extraction from the pelvic bone.
Some
10,000 people who are fighting lymphomas, leukemia and other
life-threatening blood diseases depend on an unrelated donor
for a bone marrow transplant, a needle-in-the-haystack search
for genetic compatibility.
The
challenge is especially acute for racial and ethnic minorities
because of their complex genetic makeup and
underrepresentation in donor registries, which collect cheek
swabs from millions of anonymous potential donors. The chance
of finding a good and willing match on the National Marrow
Donor Program’s Be The Match Registry, which with 9 million
members is the largest in the world, is 93 percent for white
people, 72 percent for Hispanics and Asians, and 66 percent
for blacks.
Zayas,
who faced a 10 percent chance of survival when his donor match
backed out, experienced firsthand the limitations of the
system. But he opposes compensation to increase the donor
pool, his gravest concern being where the money would come
from to ensure freedom from coercion and equal access for
patients of all economic means. (Zayas is now cancer-free,
thanks to rolling the dice on a risky bone marrow donation
from his brother, a less-than-perfect match.)
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The
California nonprofit More Marrow Donors (moremarrowdonors.org),
one of the plaintiffs in the case, wants to use private
charitable funds to reward donors with a $3,000 scholarship,
housing allowance or gift to a charity. But a general lifting
of a compensation ban opens the door to any financial
arrangement.
The
ruling has come under fire from the National Marrow Donor
Program, which worries that legalizing compensation could
complicate relationships with international partners,
discourage people who donate for altruistic reasons and
compromise the safety of the patient and donor, said Michael
Boo, the organization’s chief strategy officer.
With a
monetary incentive, cash-strapped donors might be less
inclined to reveal medical problems that could endanger their
own health or the recipient’s, Boo said. Although the risk
of serious adverse effects with the PBSC procedure is less
than 1 percent, the procedure is no walk in the park.
For five
days before the blood procedure, donors must have injections
of a medicine called filgrastrim to encourage the marrow’s
stem cells to move into the bloodstream, which can cause
headaches, bone pain or, in rare severe cases, damage the
spleen. The apheresis itself takes six to 12 hours, can cause
fatigue and dehydration and may require a central line in a
chest or neck vein.
Because
there’s no guarantee a match, or money, will be made, Rowes
said bone marrow compensation is at low risk of drawing
undesirable candidates or exploiting the poor. Only one in 40
people on the Be The Match Registry ever gets a call to get
additional testing, and just one in 540 goes on to donate.
"I
think the jury is still out on this one," said
bioethicist Tarris Rosell, at the Center for Practical
Bioethics in Kansas City, Mo. "I think we need a good
deal of public and professional discussion to make sure we
have the facts right, lest we start down a road we don’t
want to be on."
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For Erin
Wright, the hardest part of donating peripheral blood stem
cells wasn’t the two days she took off from medical school
to sit connected to an apheresis machine, for 5 ½ hours each
day, antsy and tired but otherwise OK.
It was
waiting the requisite 12 months of anonymity before she could,
with mutual consent, make contact with the 14-year-old boy who
received her stem cells to fight his untreatable anemia.
"Just
hearing his voice meant everything to me," said Wright,
29, who lives in Jersey City, N.J., and was notified that she
was a match eight years after she signed up for the registry.
"I could care less about the 18 needles in my arm; I knew
he was OK."
Laura
Houghton was similarly touched after the tearful meeting with
her marrow recipient. Houghton, who joined Be The Match after
a friend was diagnosed with leukemia, was shocked when, two
months after her friend died, she got a call saying she might
be a match for a leukemia-stricken 3-year-old boy.
Excited
to help, Houghton underwent a traditional bone marrow
extraction under general anesthesia.
Home the
same day, Houghton said she felt like she had fallen and hit
her tailbone. She took a week off from work (her employer
comped the time), and ached for two or three weeks, but was
back on the volleyball court after a month.
The boy,
now 5 and playing soccer and taking swimming lessons, called
Houghton on Thanksgiving, and she bought the family Christmas
presents.
"I
consider them part of my family," said Houghton, 26, who
lives in Brooklyn Park, Minn.
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People
age 18 to 60 can join Be The Match at a donor registry drive
or by mailing in a cheek swab. Visit bethematch.org/join.