2019-11-04_Time

68 Time November 4, 2019

post transplant immune- suppression regimen ,
his family would still have to pay some travel
and caretaker expenses associated with the sur-
gery. When NYU Langone last year performed
the first face transplant covered by commercial
insurance, the hospital estimated it would have
cost about $1.5 million out of pocket. Even with-
out taking on any of those costs, Chelsea’s fam-
ily had to launch a GoFundMe to pay for miscel-
laneous expenses, raising more than $75,000.
Even more conventional transplants can be
expensive. Tweedy says the financial burden
of becoming a living donor and recovering
from an invasive surgery, which often requires
time off from work, discourages lower-income
patients —who tend to be disproportionately of
color—from participating in transplants.
Chelsea’s 30-year-old daughter Ebony was
even more concerned than her father. Seeing
him in critical condition after his accident was
like “going to a movie theater and watching
the scariest movie that they had out, and you
replayed it over and over and over,” she says.
“You went through all that, and all of a sudden
you want to go over here and [have another
procedure]? Any surgery has complications.”
But Chelsea ultimately wanted to eat and
drink normally, to spit, to swallow a pill, to
close his mouth—and, most of all, he said, to
kiss Ebony on the cheek. Eventually he decided
those promises outweighed the risks.
It took a while, he says, to recognize the
significance of becoming the first African-
American face-transplant recipient. When the
realization came, it was tinged with discomfort.
“There is a degree of pride, admittedly, and yet
I’m not sure that it’s something to be proud of,”
Chelsea said about six months before his sur-
gery. “To celebrate an individual because they
haven’t done anything any more than anybody
else, they just happened to be there at the right
time... there’s nothing holy about those ac-
tions.” Still, Chelsea could recognize that the
surgery came with a higher purpose: providing
a positive example of how transplantation can
change lives, especially for black Americans.
“We are a lot more hesitant to be a donor,” he
says. “It causes us to lose out when we need a
kidney or a liver or a lung.”

Chelsea’s surgeon was unDaunteD by
the year-plus search for a donor, even after
coming so close with the first face last spring.
“All it takes is one. Sooner or later you will find
one,” Pomahac said about six months before
ultimately finding the donor face that would
become Chelsea’s. Last year, less than 7% of
the organs procured in overwhelmingly white

New England, where Brigham and Women’s is

located, came from African- American donors.

While Pomahac and his team could theoreti-

cally accept a donor organ from any region,

the hospital’s policy dictates that travel to the

donor site cannot exceed four hours, in part

to preserve the function of the organ. To look

outside New England—as Pomahac and his

team eventually did—would require finding a

location within easy flying distance of Boston.

Chelsea never second-guessed his deci-

sion to turn down that first face—but he also

couldn’t have guessed how long the search

would drag on. He and Pomahac had used

a 1-to-18 scale to discuss potential donors’

complexions—1 being the lightest—on which

Pomahac says Chelsea is a 15 or 16. They orig-

inally looked for donors falling from 8 to 16

but, after months of no luck, Chelsea eventually

agreed to consider donors as light as 5. Even

that didn’t work.

Then, this spring, Pomahac encouraged

Chelsea to consider a full facial transplant

instead of the partial one they’d planned

to replace just the lower portion of his face.

Pomahac was mostly focused on cosmetics,

but Chelsea and his family hoped the deci-

sion would also speed up the search process

by eliminating the need to blend exactly with

Chelsea’s surviving skin, making imperfect

matches less obvious. Chelsea agreed to the

full transplant—and finally, more than a year

after he joined the transplant waiting list, he

got the call in July. His doctors had found a

match with a near identical skin tone. He had

24 hours to make the biggest decision of his

life, based only on descriptions of the donor’s

complexion, age and medical risk factors, then

fly from Los Angeles to Boston for the surgery.

“I had to believe,” he said that day. “I was just

hoping that it was a legit call.”

In another state, another man had just re-

ceived a very different phone call. Shortly after

learning that his 62-year-old brother had died

suddenly, James, 51, was approached by the

Gift of Life Donor Program about donating

his brother Adrian’s internal organs—and his

face. James didn’t know his brother’s wishes

but was staunchly in favor of organ donation

himself after serving in the Air Force, where

he says the practice was valued. He knew that

Adrian—a talented athlete and guitarist who

loved to play Hendrix, worked in construction

and was always “ready to light up a room”—

would want to help someone else. “He would

give the shirt off his back for anybody,” James

says. After calls to his five other siblings, James

decided to move forward with donation, com-

HEALTH CARE • ACCESS

‘

All it

takes is

one.

Sooner or

later you

will find

one.

’