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Race is often used as medical shorthand for how bodies work. Some doctors want to change that. – TucsonSentinel.com

Several months ago, a lab technologist at Barnes-Jewish Hospital
mixed the blood components of two people: Alphonso Harried, who needed a
kidney, and Pat Holterman-Hommes, who hoped to give him one.

The goal was to see whether Harried’s body would instantly see
Holterman-Hommes’ organ as a major threat and attack it before surgeons
could finish a transplant. To do that, the technologist mixed in
fluorescent tags that would glow if Harried’s immune defense forces
would latch onto the donor’s cells in preparation for an attack. If,
after a few hours, the machine found lots of glowing, it meant the
kidney transplant would be doomed. It stayed dark: They were a match.

“I was floored,” said Harried.

Both recipient and donor were a little surprised. Harried is Black. Holterman-Hommes is white.

Could a white person donate a kidney to a Black person? Would race
get in the way of their plans? Both families admitted those kinds of
questions were flitting around in their heads, even though they know,
deep down, that “it’s more about your blood type — and all of our blood
is red,” as Holterman-Hommes put it.

Scientists widely agree that race is a social construct, yet it is
often conflated with biology, leaving the impression that a person’s
race governs how the body functions.

“It’s not just laypeople — it’s in the medical field as well. People
often conflate race with biology,” said Dr. Marva Moxey-Mims, chief of
pediatric nephrology at Children’s National Hospital in Washington, D.C.

She’s not talking just about kidney medicine. Race has been used as a
shorthand for how people’s bodies work for years across many fields —
not out of malice but because it was based on what was considered the
best science available at the time. The science was not immune to the
racialized culture it sprung from, which is now being seen in a new
light.

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For example, U.S. pediatricians recently ditched
a calculation that assumed Black children were less likely to get a
urinary tract infection after new research found the risk had to do with
a child’s history of fevers and past infections — not race. And
obstetricians removed race and ethnicity
from a calculation meant to gauge a patient’s ability to have a vaginal
birth after a previous cesarean section, once they determined it was
based on flawed science.

Still, researchers say those race-based
guidelines are just a slice
of those being used to assess patients, and are largely based on the
assumption that how a person looks or identifies reflects their genetic
makeup.

Race does have its place during a doctor’s visit, however. Medical
providers who give patients culturally competent care — the act of
acknowledging a patient’s heritage, beliefs, and values during treatment
— often see improved patient outcomes. Culturally competent doctors
understand that overt racism and microaggressions can not only cause
mental distress but also that racial trauma can make a person physically
sick. Race is a useful tool for identifying population-level
disparities, but experts now say it is not very useful in making
decisions about how to treat an individual patient.

Because using race as a medical shorthand is at best imprecise and at
worst harmful, a conversation is unfolding nationally among lawmakers, scientists, and doctors who say one of the best things patients can do is ask if — and how — their race is factored into their care.

Doctors and researchers in kidney care have been active recently in reevaluating their use of race-based medical guidance.

“History is being written right now that this is not the right thing
to do and that the path forward is to use race responsibly and not to do
it in the way that we’ve been doing in the past,” says Dr. Nwamaka
Eneanya, a nephrologist with Fresenius Medical Care, who in a previous
position with the University of Pennsylvania traced in the journal Naturethe history of how race — a social construct— became embedded in medicine.

The perception that there is such a thing as a “Black” or “white”
kidney quietly followed patient and donor as Harried and
Holterman-Hommes were on the path to the transplant — in their medical
records and in the screening tests recommended.

Medical records described Harried as a “47-year-old Black or African
American male” and Holterman-Hommes as a “58-year-old, married Caucasian
female.” Harried does not recall ever providing his race or speaking
with his physicians about the influence of race on his care, but for two
years or more his classification as “Black or African American” was a
factor in the equations doctors used to estimate how well his kidneys
were working. As previous KHN reporting
lays out, that practice — distinguishing between “Black” and
“non-Black” bodies — was the norm. In fall 2021, a national committee determined race has no place in estimating kidney function, a small but significant step in revising how race is considered.

Dr. Lisa McElroy,
a surgeon who performs kidney transplants at Duke University, said the
constant consideration of race “is the rule, not the exception, in
medicine.”

“Medicine or health care is a little bit like art. It reflects the
culture,” she said. “Race is a part of our culture, and it shows up all
through it — and health care is no different.”

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McElroy no longer mentions race in her patients’ notes, because it
“really has no bearing on the clinical care plan or biology of disease.”

Still, such assumptions extend throughout health care. Some primary
care doctors, for example, continue to hew to an assumption that Black
patients cannot handle certain kinds of blood pressure medications, even
while researchers have concluded
those assumptions don’t make sense, distract doctors from considering
factors more important than race — like whether the patient has access
to nutritious food and stable housing — and could prevent patients from
achieving better health by limiting their options.

Studying population-level patterns is important for identifying where
disparities exist, but that doesn’t mean people’s bodies innately
function differently — just as population-level disparities in pay do
not indicate one gender is fundamentally more capable of hard work.

“If you see group differences … they’re usually driven by what we do to groups,” said Dr. Keith Norris,
not by innate differences in those groups. Still, medicine often
continues to use race as a crude catchall, said Norris, a UCLA
nephrologist, “as if every Black person in America experiences the same
amount and the same quantity of structural racism, individualized
racism, internalized racism, and gene polymorphisms.”

In Harried and Holterman-Hommes’ case, one striking example of race
being used as shorthand for determining how people’s bodies work was an
informational guide given to Holterman-Hommes that said African
Americans with high blood pressure could not donate an organ, but
Caucasians with high blood pressure might still qualify.

“I can’t believe they actually wrote that down,” said Dr. Vanessa Grubbs,
a nephrologist at the University of California-San Francisco. That
worries Grubbs because using race as a reason to exclude donors can
create a situation in which Black transplant recipients have to work
harder to find a living donor than others would.

“I do think that criteria such as these become barriers for transplantation,” said Dr. Rajnish Mehrotra,
head of nephrology at the University of Washington. He said that type
of hypertension distinction could exclude potential donors — like the 56% of Black adults with high blood pressure in the U.S. — when more of them are sorely needed.

The inclusion of race did not necessarily affect Harried’s ability to
receive a kidney, nor Holterman-Hommes’ ability to give him one. But
following their case offers a glimpse into the ways race and biology are
often cemented together.

The St. Louis case

Harried and Holterman-Hommes met 20 years ago when they worked
together at a nonprofit that serves youth experiencing homelessness in
St. Louis. Harried was the guy who pulled kids out of their ruts and
into a creative mindset, from which they would write poems and songs and
do artwork. Holterman-Hommes said he was “the calm in their storm.”
Harried calls Holterman-Hommes “big stuff” because she is the
nonprofit’s CEO who keeps the lights on and the donations coming in.
“You never knew that she was the president of the company,” said
Harried. “There wasn’t an air about her.”

Harried resigned in 2018 as his health declined. Then in 2021, Holterman-Hommes saw a KHN article
about Harried and decided to see if she could help her former
colleague. Although Holterman-Hommes’ mother was born with one kidney,
she had lived a long and healthy life, so Holterman-Hommes figured she
could spare one of her own.

As Holterman-Hommes explored becoming a donor candidate, initial
tests showed high blood pressure readings, in addition to
lower-than-ideal kidney function. But “I like to get an A on a test,”
she said, so she redid both sets of tests, repeating the kidney function
test after staying better hydrated and the blood pressure test after a
big work deadline had passed. She moved on in the screening process
after her results improved.

Grubbs wonders whether, if Holterman-Hommes had been Black, “they
would have just dismissed her.” Grubbs shared an instance in which she
suspects that’s exactly what happened to the wife of a patient of hers
in California who needed a kidney transplant.

The wife, who is Black and was in her 50s at the time, wasn’t allowed to give the patient a kidney because of her hypertension.

“There are people in this country that will tell you that, ‘Oh, white
people donate kidneys, Black people don’t donate kidneys, and that’s
not true,’” said Mehrotra. “You hear that racist trope. But [there are]
all of these barriers to kidney donation.”

Barnes-Jewish Hospital later said it had given Holterman-Hommes an
outdated guide, “an unfortunate circumstance that is being corrected,”
and provided a new one that does not say Black people with hypertension
cannot donate. Instead, it says that people cannot donate if they have
hypertension that was either diagnosed before age 40 or requires more
than one medication to manage.

But “at some point, it was a policy,” said Harried, whose kidneys
have been failing for several years. And it’s unclear how many years
that “outdated” guidance shaped perceptions among those seeking care at
Barnes-Jewish, which performs more living-donor kidney transplants per year than any other location in Missouri, according to the Scientific Registry of Transplant Recipients.

There is little transparency into how medical centers incorporate race into their decision-making and care. Guidelines from the United Network for Organ Sharing,
the national organization in charge of the transplant system, leave the
door open for hospitals to “exclude a donor with any condition that, in
the hospital’s medical judgment, causes the donor to be unsuitable for
organ donation.”

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Tanjala Purnell, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health studying disparities in kidney transplantation,
said she knows of several centers that used race-based criteria, though
some have relaxed those rules, instead deciding case by case. “There’s
not a standard set to say, ‘Well, no, you can absolutely not have
different rules for different people,’” she said. “We don’t have those
safeguards.” Dr. Tarek Alhamad, medical director of the kidney program
at the Washington University and Barnes-Jewish Transplant Center, said
race-based criteria for kidney donations aren’t created to exclude Black
people — it was born of a desire to avoid harming them.

“African Americans are more likely to have end-stage renal disease,
they are more likely to have end-stage renal disease related to
hypertension. And they are more likely to have genetic factors that
would lead to kidney dysfunction,” said Alhamad.

Compared with white and Hispanic donors, non-Hispanic Black donors are known to be at higher risk for developing kidney failure because of their donation, though it’s still very rare.

He said it feels unethical to take a kidney from someone who may
really need it down the line. “This is our role as physicians not to do
harm.”

The science

Researchers are studying a possible way
to clarify who is really at risk in donating a kidney, by identifying
specific risk factors rather than pinning odds on the vague concept of
race.

Specifically, a gene called APOL1 could influence a person’s
likelihood of developing kidney disease. All humans have two copies of
this gene, but there are different versions, or variants, of it. Having two risk variants increases the chance of kidney injury.

The risk variants are most prevalent in people with recent African ancestry, a group that crosses
racial and ethnic boundaries. About 13% of African Americans have the
double whammy of two risk variants, said Dr. Barry Freedman, chief of
nephrology at the Wake Forest School of Medicine. Even then, he said,
their fate isn’t sealed — most people in that group won’t get kidney
failure. “We think they need a second hit, like HIV infection, or lupus,
or covid-19.”

Freedman is leading a study that looks, in part, at how kidney donors with those risk variants fare in the long term.

“This is really important because the hope is that kidneys won’t be
discarded or turned down as frequently,” said Moxey-Mims, who is also
involved in the research.

Researchers who are focused on health equity say that while APOL1
testing could help separate race from genetics, it could be a
double-edged sword. Purnell pointed out that if APOL1 is misused — for
example, if a transplant center makes a blanket rule that no one with
two risk variants can donate, rather than using it as a starting point
for shared decision-making, or if doctors offer the test based only on a
patient’s looks — it could merely add another criterion to the list by
which certain people are excluded.

“We have to do our due diligence,” said Purnell, to ensure that any
effort to be protective doesn’t end up “making the pool of available
donors for certain groups smaller and smaller and smaller.” Purnell,
McElroy, and others steeped in transplant inequities say that as long as
race — which is a cultural concept defining how someone identifies, or
how they are perceived — is used as a stand-in for someone’s ancestry or
genetics, the line between protecting and excluding people will remain
fuzzy.

“That’s the heart of the matter here,” said McElroy.

So where does race belong in kidney transplant medicine? Many of the
physicians interviewed for this article — many of them people of color —
said it primarily serves as a potential indicator of hurdles patients
may face, rather than as a marker of how their bodies function.

For example, McElroy said she might spend more time with Black
patients building trust with them and their families, or talking about
how important living donations can be, similar to the ways she might
spend more time with a Spanish-speaking patient making sure they know
how to access a translator, or with an elderly patient emphasizing how
important physical activity is.

“The purpose is not to ignore the social determinants of health — of
which race is one,” she said. “It’s to try to help them overcome the
race-specific or ethnicity-specific barriers to receiving excellent
care.”

While all the science gets sorted out, Eneanya is trying to get the
message out to patients: “Just ask the question: ‘Is my race being used
in my clinical care?’ And if it is, first of all, what race is in the
chart? Is it affecting my care? And what are my options?”

“Just keep your eyes open, ask questions,” said Harried.

In late April, a kidney from Holterman-Hommes’ body was successfully
placed into Harried’s. Both are home now and say they are doing well.

Kaiser Health News is an editorially independent news service. It is a program of the Kaiser Family Foundation, a nonpartisan health-care-policy research organization unaffiliated with Kaiser Permanente.

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