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HEALTH CARE
I N N OVAT O R S
organs like kidneys, lungs and hearts than white
patients, meaning more may die before they get
the surgeries they need. That’s in part because
African Americans, who make up about 13% of
the U.S. population, account for roughly 30%
of the transplant waiting list, according to fed-
eral data. By contrast, about 65% of deceased
donors are white, and white Americans make
up only about 40% of the waiting list.
Higher rates of chronic disease among Afri-
can Americans mean both that a disproportion-
ate number need transplants, and that fewer
have living family members healthy enough to
donate organs like kidneys and livers. Even if
they do, Shuck says, “we don’t want to ask our
family because we don’t want to put them at
risk, so we languish longer.”
Religious and philosophical beliefs may also
play a role, says Dr. Charles Bratton, a trans-
plant surgeon at Loma Linda University Health
who has studied donation disparities. Jehovah’s
Witnesses, 27% of whom are black in the U.S.,
do not accept blood transfusions, which can
also dissuade them from being involved with
organ transplants. Members of some religions
that believe in resurrection, like Southern Bap-
tists, may also want their bodies to be whole
when they die, even though most religions
allow organ donation. Finally, people in the
U.S., unlike those in some European countries,
have to actively opt in to organ donation rather
than opting out, further depressing donation
rates. All told, according to the most recent fed-
eral survey on attitudes toward organ donation,
only 39% of black Americans’ driver’s licenses
marked them as organ donors, compared with
almost 65% of white Americans.“Do you see the way they look at me? It’s
cute. They’re curious,” Chelsea said the first
time we met, in November 2018, months before
his surgery. He’d told me to drive straight from
the airport to his gym in Victorville, Calif.—
it was Monday, and he always worked out on
Mondays. From there, we went on an errand
to Metro PCS, then to pick up tacos for lunch.
People stared, but Chelsea was good- natured
about it. “I don’t blame them,” he said. “It’s
scary. It’s like I’m wearing a Halloween mask.”
Five years after his accident, Chelsea in-
sisted that his appearance didn’t bother him,
in large part thanks to the deep-seated Chris-
tian faith that helped him through his recov-
ery. He also joked that he was “no knockout
looker” before the accident, though friends
and family remember it differently. His accep-
tance was so unflinching, in fact, that when Dr.
Bohdan Pomahac, director of plastic- surgerytransplantation at Brigham Health, first ap-
proved him for a face transplant, Chelsea wasn’t
sure he wanted one at all.
Chelsea’s attitude was exceptional. Los-
ing one’s face—a person’s introduction to the
world—is psychologically scarring for most
who experience it. Face- transplant recipients
are required to undergo extensive counseling
to ensure they’re prepared to accept their new
appearance. It can be especially difficult when
one’s racial identity is also at stake. While a
black patient awaiting a kidney or heart doesn’t
need a black donor, a complexion match is con-
sidered crucial for visible transplants, to pre-
serve as much of one’s identity as possible.
Physical appearance is far from the only de-
terminant of racial identity, but it’s certainly a
factor, says Jessica DeCuir-Gunby, a professor
at North Carolina State University who stud-
ies the topic but has not worked with Chelsea.
Accepting a face from a donor with a much
lighter skin tone could present a nuanced set
of emotions, she says, since black identity ex-
ists across a spectrum of colors, hair textures
and facial features. A drastic change in ap-
pearance can unmoor someone from his or her
identity, potentially resulting in psychological
trauma, she says. Dr. Sheila Jowsey-Gregoire,
a transplant psychiatrist at the Mayo Clinic
who has not worked with Chelsea, says that
while most face- transplant patients have done
the hard work of accepting that they’ll never
look exactly like they once did, altering their
racial identity could lead to unforeseen nega-
tive consequences.
The need for a precise color match fur-
ther shrinks an already small pool of poten-
tial donors: in the federal survey on organ do-
nation, only about 41% of black respondents
said they’d be at least “somewhat” willing to
donate a face, vs. about 61% of Caucasian re-
spondents. Even Chelsea, who is largely un-
interested in the superficial aspects of appear-
ance, balked at the prospect of accepting a face
so much lighter than the one he knew.
It wasn’t just the possibility of a stranger
in the mirror that gave Chelsea pause. Organ-
transplant patients need to take immune-
system- suppression drugs for the rest of their
lives to keep their bodies from rejecting their
donor organs. His health had been stable in
the years after his recovery from the acci-
dent, and the transplant would take him back
to a world of constant doctor’s appointments
and medications. And while Chelsea’s surgery
would be performed for free, thanks to a grant
Brigham and Women’s received from the De-
partment of Defense to test a less cumbersomeIsabel
Van de Keere
Rehab in
virtual reality
Isabel Van de Keere was at
work one day in 2010 when
a steel light fixture pulled
loose from the ceiling and
fell on her. The accident left
Van de Keere, a Belgian-
born Ph.D. in biomedical
engineering, with a cervical
spine injury and severe
vertigo that required
three years of intense
neurological rehabilitation.
She practiced the same
tedious exercises dozens
of times in a row, with
progress so slow it seemed
undetectable. Now 38,
she’s the founder and CEO
of Immersive Rehab, a
London-based startup
whose goal is to change
the neurological- rehab
experience using virtual
reality. By expanding the
range and type of exercises
patients can try, VR creates
more opportunities to
harness the brain’s plasticity
and repair neural pathways;
increases the amount of
data caregivers can use
to measure progress and
adapt programs; and
improves the monotonous,
frustrating experience
of rehab. Feedback from
volunteer patients and
therapists has been
promising; the company is
now preparing to run clinical
trials in the U.S. and Europe.
JOHN FRANCIS PETERS FOR TIME ÑCorinne Purtill