From Portside <[email protected]>
Subject The Black American Amputation Epidemic
Date May 25, 2020 7:36 AM
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[It is the cardinal sin of the American health system in a single
surgery: save on preventive care, pay big on the backend, and let the
chronically sick and underprivileged feel the extreme consequences.]
[[link removed]]

THE BLACK AMERICAN AMPUTATION EPIDEMIC  
[[link removed]]

 

Lizzie Presser
May 19, 2020
ProPublica
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_ It is the cardinal sin of the American health system in a single
surgery: save on preventive care, pay big on the backend, and let the
chronically sick and underprivileged feel the extreme consequences. _

Black patients were losing limbs at triple the rate of others., Ruddy
Roye for ProPublica

 

IT WAS A FRIDAY EVENING in the hospital after a particularly grueling
week when Dr. Foluso Fakorede, the only cardiologist in Bolivar
County, Mississippi, walked into Room 336. Henry Dotstry lay on a cot,
his gray curls puffed on a pillow. Fakorede smelled the circumstances
— a rancid whiff, like dead mice. He asked a nurse to undress the
wound on Dotstry’s left foot, then slipped on nitrile gloves to
examine the damage. Dotstry’s calf had swelled to nearly the size of
his thigh. The tops of his toes were dark; his sole was yellow,
oozing. Fakorede’s gut clenched. _Fuck_, he thought. _It’s
rotten_.

Fakorede, who’d been asked to consult on the case, peeled off his
gloves and read over Dotstry’s chart: He was 67, never smoked. His
ultrasound results showed that the circulation in his legs was poor.
Uncontrolled diabetes, it seemed, had constricted the blood flow to
his foot, and without it, the infection would not heal. A surgeon had
typed up his recommendation. It began: “Mr. Dotstry has limited
options.”

Fakorede scanned the room. He has quick, piercing eyes, a shaved head
and, at 38, the frame of an amateur bodybuilder. Dotstry was still.
His mouth arched downward, and faint eyebrows sat high above his lids,
giving him a look of disbelief. Next to his cot stood a flesh-colored
prosthetic, balancing in a black sneaker.

“How’d you lose that other leg?” Fakorede asked. Dotstry was
tired, and a stroke had slowed his recall. Diabetes had recently taken
his right leg, below the knee. An amputation of his left would leave
him in a wheelchair.

Fakorede explained that he wasn’t the kind of doctor who cuts. He
was there because he could test circulation, get blood flowing, try to
prevent any amputation that wasn’t necessary. He hated that doctors
hadn’t screened Dotstry earlier — when he’d had the stroke or
lost his leg. “Your legs are twins,” he said. “What happens in
one happens in the other.”

Dotstry needed an immediate angiogram, an imaging test that would show
blockages in his arteries. He also needed a revascularization
procedure to clean them out, with a thin catheter that shaves plaque
and tiny balloons to widen blood vessels. His foot was decaying, fast.
Though Fakorede ran an outpatient practice nearby, when doctors
consulted him on inpatients at Bolivar Medical Center, the local
hospital, he expected to use its facilities.

He asked his nurse to schedule the procedures. But by the time he had
driven home to his ranch house on the northern edge of town, he
hadn’t received an answer. Nor had he when he woke up on Saturday at
3:30 a.m., as he did every morning. By sunrise, he was restless at his
kitchen counter, texting the hospital’s radiology director,
explaining the need for an intervention on Monday, Martin Luther King
Jr. Day. Within a few hours, he got a response: “I don’t have the
staff or the supplies. I’m sorry.”

Now Fakorede was mad, walking briskly into his office, dialing friends
on speaker phone, pacing around his conference room. He’d been
raised in Nigeria, moved to New Jersey as a teenager and had come to
practice in Mississippi five years earlier. He’d grown obsessed with
legs, infuriated by the toll of amputations on African Americans. His
billboards on Highway 61, running up the Delta, announced his
ambitions: “Amputation Prevention Institute.”

Nobody knew it in January, but within months, the new coronavirus
would sweep the United States, killing tens of thousands of people, a
disproportionately high number of them black and diabetic. They were
at a disadvantage, put at risk by an array of factors, from unequal
health care access to racist biases to cuts in public health funding.
These elements have long driven disparities, particularly across the
South. One of the clearest ways to see them is by tracking who suffers
diabetic amputations, which are, by one measure
[[link removed]],
the most preventable surgery in the country.

Look closely enough, and those seemingly intractable barriers are made
up of crucial decisions, which layer onto one another: A panel of
experts decides not to endorse screening for vascular disease in the
legs; so the law allows insurance providers not to cover the tests.
The federal government forgives the student loans of some doctors in
underserved areas, but not certain specialists; so the physicians most
critical to treating diabetic complications are in short supply.
Policies written by hospitals, insurers and the government don’t
require surgeons to consider limb-saving options before applying a
blade; amputations increase, particularly among the poor.

Despite the great scientific strides in diabetes care, the rate of
amputations across the country grew
[[link removed]] by
50% between 2009 and 2015. Diabetics undergo 130,000 amputations each
year, often in low-income and underinsured neighborhoods. Black
patients lose limbs at a rate triple
[[link removed]] that
of others. It is the cardinal sin of the American health system in a
single surgery: save on preventive care, pay big on the backend, and
let the chronically sick and underprivileged feel the extreme
consequences.

Henry Dotstry, Dr. Foluso Fakorede’s patient. (Ruddy Roye for
ProPublica)

Fakorede grabbed his car keys and headed to the hospital. He walked
straight to the lab. As he suspected, it had all the supplies that he
needed. _Why won’t they give me staff?_ he wondered. _They
wouldn’t do that to a surgeon._

He has little tolerance for this kind of transgression. He is
militaristic, to an extreme. To him, nonhealing wounds are like heart
attacks. “Time is muscle,” he repeats. He calls huddles when
nurses forget to check a patient’s ankles: “If you haven’t
assessed both legs, I don’t want to walk into that room.” He
considers each of his procedures an act of war. When people stand in
his way, he sends a barrage of text messages, punctuated by
exclamation marks. And he uses his cellphone to collect evidence that
the system is working against his patients, and his efforts.

He pulled out his iPhone and photographed the hospital’s wires and
catheters, IVs and port protectors. He shot the images over to the
hospital’s radiology director. Fakorede’s private practice was
closed for the holiday weekend. He calculated that he had only a few
days to carry out some plan before Dotstry’s remaining leg was
amputated.

TWO MAPS EXPLAIN why Fakorede has stayed in the Mississippi Delta.
One shows America’s amputations from vascular disease. The second
shows the enslaved population before the Civil War; he saw it at a
plantation museum and was stunned by how closely they tracked. On his
phone, he pulls up the images, showing doctors, or history buffs, or
anyone who will listen. “Look familiar?” he asks, toggling between
the maps. He watches the realization set in that amputations are a
form of racial oppression, dating back to slavery.

AVERAGE ANNUAL AMPUTATIONS, 2007–9

The average number of amputations for peripheral artery disease per
10,000 patients per year. Source: Dartmouth Atlas of Healthcare
[[link removed]]

ENSLAVED POPULATION IN 1860

The percentage of the population enslaved in 1860. Source: IPUMS
NHGIS [[link removed]], University of Minnesota

Fakorede was initially tempted to move to the Delta while practicing
in Tennessee. He befriended a medical device sales rep named Maurice
Hampton who had grown up in the Mississippi region. Hampton talked
about how black families were leery of local hospitals and how few
black doctors in the Delta specialized in vascular work. “It’s the
norm to go to Walmart and see an amputation or a permacath in the
neck,” he’d told Fakorede. “If you don’t see one, then you
didn’t stay but two minutes.”

Then, a little over a year into his Tennessee job, Fakorede found
himself at loose ends. He’d raised concerns that he was being billed
for expenses that weren’t his and asked for an audit; though the
audit later found that the clinic where he worked had claimed over
$314,000 in improper expenses, he was quickly terminated.
Fakorede sued the clinic
[[link removed]] for
retaliation under the False Claims Act and lost. (The clinic’s
lawyer said his client had no comment, but there were “numerous”
reasons for Fakorede’s departure.) In the spring of 2015, he had a
mortgage, a quarter of a million dollars in student debt and four
months of severance pay. He also had an impulse to understand the
Delta.

A highway in the Mississippi Delta. (Andrea Morales for ProPublica)

Fakorede spent four days driving through its long, flat stretches of
farmland dotted with small towns and shotgun houses. The wood-slat
homes and bumpy roads reminded him of his grandparents’ village in
the Nigerian state of Ondo, where he’d spent summers as a kid. He
drove scores of miles on the Mississippi highways without seeing a
single grocery store; fast-food chains lit the busiest intersections.
He was startled by the markers of disease — the missing limbs and
rolling wheelchairs, the hand-built plywood ramps with metal rails. He
thought of amputees like “an hourglass,” he said, “that was
turned the day they had their amputation.” Mortality rates rise
after the surgeries, in part, because many stop walking. Exercise
improves circulation and controls blood sugar and weight. The less
activity a person does, the higher the risk of heart attacks and
strokes. Within five years, these patients were likely
[[link removed]] to
be dead.

Fakorede weighed taking a lucrative job up north, near his parents,
who had both been diagnosed with diabetes. He had professional
connections there; he’d gone to Rutgers Robert Wood Johnson Medical
School and done a residency at NewYork-Presbyterian Weill Cornell
Medical Center. But the South, he felt, needed him. About 30 million
people in America had diabetes, and Mississippi had some of the
highest rates. The vast majority had Type 2; their bodies resisted
insulin or their pancreas didn’t produce enough, making their blood
sugar levels rise. Genetics played a role in the condition, but so did
obesity and nutrition access: high-fat meals, sugary foods and not
enough fiber, along with little exercise. Poverty can double the odds
of developing diabetes, and it also dictates the chances of an
amputation. One major study mapped diabetic amputations
[[link removed]] across
California, and it found that the lowest-income neighborhoods had
amputation rates 10 times higher than the richest.

The Delta was Mississippi’s poorest region, with the worst health
outcomes. Fakorede had spent years studying health disparities:
African Americans develop chronic diseases a decade earlier
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their white counterparts; they are twice as likely
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diabetes; they live, on average, three years fewer
[[link removed]]. In the
Delta, Fakorede could treat patients who looked like him; he could
find only one other black interventional cardiologist in the entire
state. A growing body of evidence had shown how racial biases
throughout the medical system meant worse results for African
Americans. And he knew the research
[[link removed]] —
black patients were more responsive to, and more trustful of, black
doctors. He decided after his trip that he’d start a temporary
practice in Mississippi, and he rented an apartment deep in the Delta.

He fantasized about building a cardiovascular institute and recruiting
a multidisciplinary team, from electrophysiologists to podiatrists.
But as he researched what it would take, he found a major barrier.
Medical specialists with student debt, who graduate owing a median of
$200,000, generally could not benefit from federal loan forgiveness
programs unless they got jobs at nonprofit or public facilities. Only
a few types of private practice providers — primary care, dentists,
psychiatrists — qualified for national loan forgiveness. The Delta
needed many other physicians. Though Bolivar County was at the center
of a diabetes epidemic, there wasn’t a single diabetes specialist,
an endocrinologist, within 100 miles.

Fakorede in his clinic with a patient. (Ruddy Roye for ProPublica)

Fakorede leased a windowless space in the Cleveland Medical Mall, a
former shopping center that had been converted to doctors’ offices.
People came to him with heart complaints, but he also asked them to
remove their socks. Their legs alarmed him. Their toes were black and
their pulses weak. Their calves were cold and hairless. Some had
wounds but didn’t know it; diabetes had numbed their feet. Many had
been misdiagnosed with arthritis or gout, but when Fakorede tested
them, he found peripheral artery disease, in which clogged arteries in
the legs limit the flow of blood.

This is what uncontrolled diabetes does to your body: Without enough
insulin, or when your cells can’t use it properly, sugar courses
through your bloodstream. Plaque builds up faster in your vessels’
walls, slowing the blood moving to your eyes and ankles and toes.
Blindness can follow, or dead tissue. Many can’t feel the pain of
blood-starved limbs; the condition destroys nerves. If arteries close
in the neck, it can cause a stroke. If they close in the heart, a
heart attack. And if they close in the legs, gangrene.

Within a month, Bolivar Medical Center had credentialed Fakorede,
allowing him to consult on cases and do procedures in the hospital.
His most complicated patients came in through the emergency room. Some
arrived without any inkling that they had gangrene. One had maggots
burrowing in sores. Another showed up after noticing his dog eating
the dead flesh off the tips of his toes. Fakorede took a photo to add
to his collection. “It was a public health crisis,” he told me.
“And no one was talking about amputations and the fact that what was
happening was criminal.”

On weekends, Fakorede had been driving back to his five-bedroom home
in Tennessee, but in August of 2015, he decided to go all-in on
Bolivar County. He sold his house and black Mercedes G-Wagon, and
applied for funding to build a practice in the Delta: Cardiovascular
Solutions of Central Mississippi. He pitched himself as a heart guy
and a plumber, removing buildup in the arteries. Four banks denied him
loans, so he borrowed money from friends. He gave himself a two-year
window to reduce amputations and publish his outcomes.

The Delta was once a cotton empire. (Andrea Morales for ProPublica)

THE DELTA FLOOD PLAIN runs 7,000 square miles along the northwestern
edge of the state, with sweet-smelling, clay-like soil cordoned
between bluffs and the banks of the Mississippi River. By the 19th
century, the primeval forests had been transformed into a cotton
empire; at the start of the Civil War, more than 80% of people in many
Delta counties were enslaved. Sharecropping emerged after
emancipation, and black farmers cultivated small plots in return for a
portion of their crop. They lived on credit — for food and feed and
clothing — until the harvest, but even then, their earnings rarely
covered their expenses.

For decades, African Americans in the South struggled to find and
afford health care. The American Medical Association excluded black
doctors, as did its constituent societies. Some hospitals admitted
black patients through back doors and housed them in hot, crowded
basements. Many required them to bring their own sheets and spoons, or
even nurses. Before federal law mandated emergency services for all,
hospitals regularly turned away African Americans, some in their final
moments of life.

Fakorede was drawn to Bolivar County, in part, because of its history.
He’d run out of gas there when he was first scouting the region, and
later that evening, he’d Googled its background. For a brief moment,
Bolivar was the center of a movement for public health care, driven by
the conviction that racial equality was not possible without justice
in health. In 1964, when a group of physician activists traveled to
the Delta, Robert Smith, a black doctor from Jackson, saw rocketing
rates of intestinal parasites and maternal death. “I understood for
the first time what it truly meant to be black in Mississippi,” he
told a magazine. Under President Lyndon B. Johnson’s War on Poverty,
a Boston doctor secured funding to open a community health center in
Bolivar, which he grew with the help of Smith. Clinicians worked with
residents to take on housing, sanitation, exercise and nutrition. Its
success spawned a national project of more than a thousand Federally
Qualified Health Centers for the underserved. But funding shrank under
President Richard Nixon, and the centers’ initiatives were scaled
back to basic primary care.

By the time Fakorede moved to the Delta, in 2015, the state had the
nation’s lowest number of physicians per capita. It had not expanded
Medicaid to include the working poor. Across the country, 15% of
African Americans were still uninsured, compared with 9% of white
Americans. That year, Jennifer Smith, a professor at Florida A&M
University College of Law, wrote in the National Lawyers Guild Review
what Fakorede saw firsthand: “While the roots of unequal and
inequitable health care for African Americans date back to the days of
slavery, the modern mechanisms of discrimination in health care has
shifted from legally sanctioned segregation to inferior or
non-existent medical facilities due to market forces.”

Fakorede understood that to reach patients, he needed referrals, so he
met primary care providers at hospitals and clinics. He asked them to
screen for vascular disease, measuring blood pressure at the ankle and
the arm. Many didn’t have the time; given the shortage of local
physicians, some were seeing up to 70 patients a day. Others didn’t
know much about peripheral artery disease or why it was important to
diagnose. Some were offended by Fakorede’s requests. Michael
Montesi, a family doctor, was grateful for the help, but he found it
brash for the new doctor in town to start telling the veterans what to
do. He recalled thinking, “Where were you the first 12 years of my
practice, when I needed a cardiologist, when I needed an OB-GYN, when
I needed a surgeon, when I had to do an amputation in the ER, or
deliver a baby that was 23 weeks and watch the baby die because there
was nobody there that could take care of him?”

The brushoffs disturbed Fakorede, but when he dug deeper, he realized
that the doctors weren’t only overwhelmed; they had no guaranteed
payment for this vascular screening. The Affordable Care Act mandates
that insurers cover all primary care screenings that are recommended
by the U.S. Preventive Services Task Force, an independent panel of
preventive care experts. The group, though, had not recommended
testing anybody without symptoms, even the people most likely to
develop vascular disease — older adults with diabetes, for example,
or smokers. (Up to 50% of people who have the disease are believed to
be asymptomatic.) As specialists, cardiologists are reimbursed if they
screen patients with risk factors. But by the time patients got to
Fakorede, the disease was sometimes too far along to treat. Many
already had a nonhealing wound, what’s known as “end stage”
peripheral artery disease, the last step before an amputation.

When Luvenia Stokes came to Fakorede, she had already lost her right
leg at the age of 48. Like many Delta residents, she grew up in a food
desert, and without money for fresh produce, she’d developed
diabetes at a young age. She said that a pedicurist nicked her toe,
and the small cut developed an infection. Without good blood flow, it
began bubbling with pus. Stokes told Fakorede that no doctor had
performed an angiogram to get a good look at the circulation or a
revascularization to clean out the arteries. A surgeon removed her
second toe. Without cleared vessels, though, the infection spread.
Within weeks, a new surgeon removed her leg.

Luvenia Stokes. (Ruddy Roye for ProPublica)

Stokes lived in a single-wide trailer with her mother. Her wheelchair
could not fit in the doorways, so she inched through sideways with a
walker. Because she could hardly exercise, she gained 48 pounds in two
years. The amputation hadn’t treated her vascular disease, and a
stabbing pain soon engulfed her remaining leg, “like something is
clawing down on you,” she said. When she finally made it to
Fakorede, she told him that one doctor had prescribed neuropathy
medication and another had diagnosed her with arthritis. “I’m not
letting them get that other leg,” Fakorede told her. Stokes’
grandmother, Annie, who lives in a nearby trailer, had lost both her
legs, above the knee, to diabetes. Her cousin Elmore had lost his
right leg, too.

General surgeons have a financial incentive to amputate; they don’t
get paid to operate if they recommend saving a limb. And many
hospitals don’t direct doctors to order angiograms, the most
reliable imaging to show if and precisely where blood flow is blocked,
giving the clearest picture of whether an amputation is necessary and
how much needs to be cut. Insurers don’t require the imaging,
either. (A spokesperson for America’s Health Insurance Plans, a
leading industry trade association, said, “This is not an area where
there is likely to be unnecessary surgery.”) To Fakorede, this was
like removing a woman’s breast after she felt a lump, without first
ordering a mammogram.

Nationwide, more than half
[[link removed]] of
patients do not get an angiogram before amputation; in the Delta,
Fakorede found that the vast majority of the amputees he treated had
never had one. Now, he was determined to make sure that no one else
lost a limb before getting the test. This wasn’t a controversial
view: The professional guidelines for vascular specialists — both
surgeons and cardiologists — recommend imaging of the arteries
before cutting, though many surgeons argue that in emergencies,
noninvasive tests like ultrasounds are enough. Marie Gerhard-Herman,
an associate professor of medicine at Harvard Medical School and a
cardiologist at Brigham and Women’s Hospital, chaired the committee
on guidelines
[[link removed]] for
the American College of Cardiology and the American Heart Association.
She told me that angiography before amputation “was a view that some
of us thought was so obvious that it didn’t need to be stated.”
She added: “But then I saw that there were pockets of the country
where no one was getting angiograms, and it seemed to be along racial
and socioeconomic lines. It made me sick to my stomach.”

Stokes wasn’t at immediate risk of losing her left leg when she met
Fakorede, but pain prevented her from walking. She had a severe form
of the disease, and Fakorede booked her for an angiogram and
revascularization. He inserted a wire into her arteries and cleaned
out the clogged vessels, letting oxygen-rich blood rush to her
remaining foot. While she was recovering in Fakorede’s lab, she
thought about her neighbors who had the same problems. “I really
don’t like what’s happening to us,” she said to me. “They’re
not doing the tests on us to see if they can save us. They’re just
cutting us off.”

A wooden ramp and concrete steps outside Stokes’ trailer. (Ruddy
Roye for ProPublica)

Patients didn’t know about vascular disease, or why their legs
throbbed or their feet blackened, so Fakorede went to church. The
sales rep, Hampton, introduced him to pastors, and several times each
month, he stood before a pulpit. He told the crowds that what was
happening was an injustice, that they didn’t need to accept it. He
told them to get screened, and if any surgeon wanted to cut off their
limbs, to get a second opinion. In the lofty Pilgrim Rest Baptist
Church, in Greenville, he asked the congregation, “How many of you
know someone or know of someone who’s had an amputation?” Almost
everyone raised their hands.

At first, Fakorede took a confrontational approach with colleagues.
Some seemed skeptical that he could “prevent” amputations; it’s
a tall claim for a complex condition. Once, when a doctor had
disregarded his advice, he’d logged it in the electronic health
record, so the oversight would be on display for anyone who looked up
his patient’s chart. Fakorede could fume when people questioned his
authority; self-confidence carried him, but it sometimes blinded him
to his missteps. Over time, though, Fakorede tried to rein in the
arrogance. “You peel off a layer that may be comprised of: I’m
from up North, I know it all, you should be thankful we’re here to
provide services that you probably wouldn’t get before.” He picked
up some Southern manners. Fakorede began texting doctors with photos
of their patients’ feet along with X-rays of their arteries, before
his intervention and afterward. Referrals picked up, and within a
year, he’d seen more than 500 patients.

But Bolivar Medical Center, he learned, was turning away people who
couldn’t pay a portion of their revascularization bill upfront.
Several former employees told me the same. “It’s a for-profit
hospital, it’s no secret, it’s the name of the game,” Fakorede
said. “But a for-profit hospital is the only game in town in one of
the most underserved areas. So what happens when a patient comes in
and can’t afford a procedure that’s limb salvage? They eventually
lose their limbs. They’ll present back to the emergency room with a
rotten foot.” And a surgeon would have no choice but to amputate. (A
hospital spokeswoman said that last year, it gave $25 million in
charity care, uncompensated care and uninsured discounts. Asked if it
turned away patients who couldn’t pay for revascularization, she did
not respond directly: “We are dedicated to providing care to all
people regardless of their ability to pay.”)

The practice was discriminatory, he reasoned, and also financially
backward. At $237 billion in medical costs each year, diabetes is the
most expensive chronic disease in the country; one of every four
health care dollars is spent on a person with the condition. Left
untreated, the costs pile on. Medicare spends 
[[link removed]]more
than $54,000 a year
[[link removed]] for
an amputee, including follow-ups, wound care and hospitalizations; the
government program is the country’s largest payer. Then come the
uncounted tolls: lost jobs, a dependence on disability checks,
relatives who sacrifice wages to help with cooking and bathing and
driving.

By the time Carolyn Williams came to see Fakorede, in 2016, she’d
been uninsured with diabetes for 20 years; she’d worked at a housing
nonprofit and for a food assistance program, but neither had offered
coverage. At the age of 36, she’d needed a triple bypass surgery,
and at 44, she had three toes amputated. Untreated leg pain left her
needing a wheelchair; she pulled out of Delta State University, where
she was pursuing a degree in social work. Fakorede reconstituted blood
flow in her legs and got her walking. But the diabetes was already
destroying her kidneys. She joined the government’s disability
rolls. She also went on dialysis, at a yearly cost to Medicare of
$90,000.

On the days when Fakorede wanted to give up and leave, he drove to an
Emmett Till memorial in Money, Mississippi. After 14-year-old Till was
mutilated and murdered, in 1955, his mother had insisted on opening
his casket. “Let the people see what I’ve seen,” she said, and
his image brought national outrage to racist violence in the South.
Fakorede thought often about how that decision sparked the Civil
Rights movement. He thought about it as he exhibited his photos of
rotten feet and limbless bodies, his own proof of what he considered a
modern atrocity. He didn’t want to live by Bolivar Medical’s
policies. He decided that in order to treat as many people as
possible, irrespective of income or insurance, he needed to build a
lab of his own.

THIS JANUARY, THAT LAB was now Dotstry’s best shot. The
hospital’s consulting surgeon expected to amputate his leg below the
knee. He had written that because Dotstry’s kidneys were impaired,
the contrast dye in an angiogram would be dangerous. But Fakorede
could replace the dye with a colorless gas, which wouldn’t
jeopardize Dotstry’s health.

It would have made the most sense to perform the procedure at the
hospital; Dotstry had been admitted and was occupying a bed. But after
Fakorede opened his outpatient lab and hired away two techs and a
nurse, a spokeswoman said the hospital stopped doing certain
interventions. She told me it shouldn’t have surprised Fakorede that
they couldn’t schedule Dotstry’s case, and that if he had been
unable to treat a patient in his lab, the hospital could have worked
with him to find another. Fakorede told me he’d never received such
a message. When a doctor asks him to treat an inpatient with an acute
condition, his responsibility, as he sees it, is to do it in the
hospital. “If I don’t have a hospital that wants to coordinate,”
he asked, “what do I do?”

Fakorede prepares for a procedure. (Ruddy Roye for ProPublica)

The answer, at least this time, was to get his patient out of there.
He called Dotstry’s doctor and convinced her to discharge him for
the intervention. Then, at noon on Saturday, Fakorede walked back into
Room 336. Dotstry’s sister, Judy, was standing by his bed. She wore
tall leather boots over acid-washed jeans, with a thick, black wig in
a braid down her back.

Fakorede handed over his card. “I called the hospital to see if we
can do this case on Monday,” he said, “and they said no.”

Judy inhaled. “What now?”

Fakorede laid out the plan for a Monday morning angiogram in his own
procedure room. He would open up as many vessels as he could. If he
could get circulation to Dotstry’s foot, he might be able to save
it. He wasn’t sure about the toes.

When Dotstry had suffered his stroke several years back, Judy had
become his caregiver. She’d stopped taking jobs in home care and
supported her brother without pay — shuttling him to doctors’
appointments, controlling his sugars, managing his medications. After
his amputation, she’d helped him learn to walk again. In place of a
salary, she’d drawn disability for an old work injury; she’d been
electrocuted while operating a machine, and the nerves in her arm were
damaged, making her hands tremble. But she couldn’t stay unemployed
forever. This past fall, she had gone back to work, cleaning the local
post office.

After Fakorede left, Judy looked over at her brother, who sat slumped
over the side of the cot, a blue gown slipping off his bony shoulders.
Their father had been a sharecropper, and Dotstry had dropped out of
elementary school to help on the farm, harvesting soybeans, rice and
cotton. Of 10 kids, he was the oldest boy, and he took care of the
others, bringing in cash and cooking them dinner. They almost never
saw a doctor. Instead, they’d relied on cod liver oil, or tea from
hog hoofs, parched over a fire.

Dotstry had spent his career driving tractors, hauling crops and
plowing fields, but he wasn’t insured and still rarely saw doctors.
At 60, when he was diagnosed with Type 2 and prescribed insulin, he
didn’t know how to manage the medicine properly; he had never
learned to read. Insulin pumps were too expensive — 
[[link removed]]more
than $6,000. His blood sugar levels often dropped, and he sometimes
passed out or fell on the job. Little by little, his employer cut back
his duties. In 2015, he had a stroke; diabetes had raised his risk. A
year later, his right foot blackened and was amputated at the ankle.
The infection kept spreading, and soon, his lower leg went. He could
no longer work.

Two of his sisters had died after complications of diabetes. Judy had
stood over their beds like she was now standing over
Dotstry’s. _He’s still here_, she reminded herself.

Dotstry with his niece Shequita, his girlfriend and his sister
Judy. (Ruddy Roye for ProPublica)

She pulled out her phone and called another brother. “They gonna
amputate his foot, cause it’s bad,” she said. “Toe’s
rotted.”

Dotstry looked up from the bed. “No!” he shouted. “They can’t
take that off. Why?”

“Why you think your foot look like that? Why you think it smells? It
stinks!” she said. Dotstry reached down to unwind the gauze. Judy
wondered why he hadn’t told her that his foot was infected sooner.
She lowered her voice. “You were doing pretty good. If you wasn’t,
I could have tried to get back in there and do something.”

Her daughter, Shequita, ran into the room, huffing. She was loud and
pissed off. “Whose foot is that?” she shrieked. She kneeled by the
cot and helped Dotstry scoot up onto his pillow, stretching out his
legs. He was usually a prankster, a hard-headed contrarian, the uncle
who’d picked her up and spun her around like an airplane. She was
thrown off by how quiet he’d become.

“Your daughter wants to know if you want to come stay with her, if
you want to come to Texas,” Shequita told him.

Dotstry knew the offer was on the table, but he hadn’t yet accepted.
A few days earlier, a tornado had torn the roof from his trailer, and
he was, for the moment, without a home.

“She said it’s a lot better doctors up there,” Shequita
continued, “and if she gotta stop working to take care of you, she
can do that.” She gripped her hands around the frame of the bed and
leaned over it, locking her eyes with his. “I need you to be
thinking hard about this, sir. This ain’t you. I need you to get
back to _you_.”

“He ain’t gotta go to Texas,” Judy interrupted.

Shequita shot back: “You gonna take care of him?”

Judy was silent. She knew that she couldn’t, not like before. She
needed her paycheck for home repairs; a flood had warped her wooden
floors. But Dotstry’s daughter was younger, and Judy thought that if
she quit her job at Walmart, she’d get restless. Besides, Dotstry
knew no one in Texas. She pictured him in a wheelchair, staring off,
confused about where he was. Judy figured if he went, he’d go on and
die.

She crossed her arms. “He’ll be all right if they don’t have to
amputate that leg,” she said.

Shequita looked at her mother. She walked over to where she stood, by
a shaded window, and threw her arms around her neck. Then, she left
the room. Judy hoisted herself up onto the foot of her brother’s
cot. She swung her legs up so that she faced him, and she laid herself
down.

ABOUT EVERY FIVE YEARS, the doctors and researchers who make up the
U.S. Preventive Services Task Force reassess their screening
guidelines. In 2018, the members returned to peripheral artery disease
and the blood flow tests that Fakorede had asked local primary care
doctors to conduct. Once again, the panel declined to endorse them,
saying there was not enough evidence that the tests benefited the
average asymptomatic American.

In their statement, they acknowledged that public commenters had
raised concerns that the disease “is disproportionately higher among
racial/ethnic minorities and low-socioeconomic populations” and that
this recommendation “could perpetuate disparities in treatment and
outcomes.” In response, the panel said it needed better evidence.
But as the National Institutes of Health has found, minorities in
America make up less than 10% of patients in clinical trials.

Dr. Joshua Beckman, the director of vascular medicine at Vanderbilt
University Medical Center, was an expert reviewer of the evidence base
for the task force, and its final report struck him as irresponsible.
It hardly noted the advantages of treatment after screening; the
benefits were right there in the data that he saw. The panel
discounted the strongest study, a randomized control trial, which
demonstrated that vascular screening, for men ages 65 to 74, reduced
mortality and hospital days. (The study bundled peripheral artery
disease screening with two other tests, but in Beckman’s eyes, the
outcomes remained significant.) He was confused about why the task
force had published its evaluation of screening the general public,
when it was clear that the condition affects specific populations.
Several American and European professional society guidelines
recommended screening people with a higher risk. “You wouldn’t
test a 25-year-old for breast cancer,” he told me. “Screening is
targeted for the group of women who are likely to get it.”

Dr. Alex Krist, the chair of the task force, repeated the group’s
position in an email that the data was not strong enough to endorse
screening, even for at-risk patients. “The Task Force does not do
its own research, so we can’t fix these research gaps, but we can
— and did — ring the alarm bell to raise awareness of this vital
issue among researchers and funders.”

Fakorede performs a revascularization procedure with an
assistant. (Ruddy Roye for ProPublica)

Vascular surgeons who have spent their careers studying limb salvage
have come to see preventive care as perhaps more important than their
own last-ditch efforts to open blood vessels. Dr. Philip Goodney, a
vascular surgeon and researcher at Dartmouth and White River Junction
VA Medical Center, made a name for himself with research that showed
how the regions of the country with the lowest levels of
revascularization, like the Delta, also had the highest rates of
amputation. But revascularizations aren’t silver bullets; patients
still must manage their health to keep vessels open. Now, Goodney
believes his energy is better spent studying preventive measures
earlier in the disease’s progression, like blood sugar testing, foot
checks and vascular screening. Many patients have mild or moderate
disease, and they can be treated with medicine, counseled to quit
nicotine, exercise and watch their diet. “We need to build a health
system that supports people when they are at risk, when they are doing
better and when they can keep the risk from coming back,” he told
me. “And where there’s a hot spot, that’s where we need to
focus.”

Fakorede scrolled through the task force’s statement. “You want
more data? Really? Who has the highest amputation rates in America?”
he asked. “That’s your data.” He had taken to the national
stage, speaking at conferences about what he’d witnessed in Bolivar.
On behalf of the Association of Black Cardiologists, he testified
before Congress, convincing U.S. Rep. Donald M. Payne Jr., a Democrat
from New Jersey
[[link removed]],
along with U.S.
[[link removed]] Rep.
Gus Bilirakis, a Republican from Florida
[[link removed]],
to start a Congressional Peripheral Artery Disease Caucus. The group
is pushing for the task force to reevaluate the evidence on screening
at-risk patients, for federal insurers to start an amputation
prevention program and for Medicare to ensure that no amputation is
allowed before evaluating arteries. Other groups are advocating for
legislation that would require hospitals to publicly report their
amputation rates.

In Bolivar, Fakorede had seen more than 10,000 cardiovascular patients
from around the Delta. Dr. DeGail Hadley, a primary care provider in
town, told me that before Fakorede arrived, he wasn’t sure what was
best to do for patients with rotting feet. “It was always a process
of transferring the patients to Jackson or Memphis, which can be
difficult.” Both cities were two hours away. Now, Fakorede was
performing about 500 angiograms annually in town. Last year,
he published a paper
[[link removed]] in
Cath Lab Digest describing an 88% decrease in major amputations at
Bolivar Medical Center, from 56 to seven. (Fakorede did not provide me
with all of his sources.) The hospital has different internal figures,
which also reflect a significant decrease. Between 2014 and 2017, the
hospital recorded that major amputations had fallen 75% — from 24 to
six.

Fakorede couldn’t catch everyone in time, and he was haunted by the
patients who got to him too late. A week before he’d met Dotstry,
Sandra Wade had come in with an open sore on her right big toe. She
came from a family of diabetics. Her mother had died after a diabetic
coma. Her cousin had just lost a leg. Her oldest sister, who’d
raised her, had given up on walking when a tired, burning, itching
sensation consumed her legs. Now, Wade felt it, too.

Sandra Wade. (Ruddy Roye for ProPublica)

“I don’t want to give up like that,” Wade had said, reclining in
a cot in Fakorede’s pre-procedure room. “I want my toes. I don’t
want to lose not one limb. I choose life.” She elongated her O’s.
She was 55 and had a high, gentle voice, a wide smile and big, curled
lashes under loose, curled hair. She had spent most of her career in
food service and retail, recently managing a Family Dollar, but after
diabetes took her eyesight, she’d had to quit. She wondered if the
sodas and chips that had fueled her at the store had accelerated her
disease. Or if she’d focused so much on her son, who was
developmentally disabled, that she’d neglected herself. She didn’t
like to offload blame onto her genes. “Somebody’s gotta try to
change the cycle,” she’d said. “I really want to be the one.”

Fakorede inserted an IV into the top of her leg. He opened up each of
her blocked arteries, one at a time, until he got to the most
important one, which ran along her inner calf. It was supposed to
supply blood to her open wound, and she needed it to heal. Without it,
she’d likely lose her toe. If she didn’t control her sugars, she
could lose her lower leg next. Fakorede was hopeful as he slid a wire
through the vessel in her knee, and into that crucial artery in her
calf. But then, about a third of the way down, it stopped. It was as
if the vessel itself had evaporated.

UNDER A CRISP, WIDE SKY, on Martin Luther King Jr. Day, churches
around town were opening their doors for services. Fakorede’s office
was scheduled to be closed, but he’d called in his nurses and
radiology technicians, even those out hunting deer, to staff
Dotstry’s case.

“What’s up, young man?” Fakorede greeted Dotstry, who was slowly
fading into his Ambien, and he handed Judy a diagram of a leg. “The
prayer is that we can find this many vessels to open up,” he said,
pointing to the paper. “As soon as I’m done, I’ll let you know
what I find.”

In the procedure room, he put on his camouflage-patterned lead apron,
and with an assistant, he inserted an IV near Dotstry’s waist. He
wound a wire across Dotstry’s iliac artery, into the top of his left
leg. The femoral artery was open, even though it had hardened around
the edges, a common complication of diabetes. They shot a gas down the
arteries in Dotstry’s lower leg so the X-ray could capture its flow.
Fakorede looped his thumbs into the top of his vest, waiting for the
image. Other than a small obstruction, circulation to the toes was
good. “They don’t need to whack off the knee,” he said, staring
at the screen. Dotstry would lose one toe.

After they’d cleaned out the plaque, Fakorede called Judy into the
lab and pulled up the X-rays. Dotstry snored in the background. The
doctor showed Judy a playback of the blood moving through the vessels.
She could tell that his foot had enough flow. She folded over, running
her palms along her thighs. “Y’all have done a miracle, Jesus.”

Dotstry would need aggressive wound care, help controlling his sugars
and a month in rehab following his toe amputation. In the meantime,
Judy and her daughter would have to learn to manage his antibiotics
and find him an apartment. He’d still be able to tinker with his
cars, as he did most afternoons. And as far as Judy was concerned, he
wasn’t moving to Texas.

Fakorede scrubbed out. He sat at his desk to update Dotstry’s
doctors. He called an infectious disease specialist, 35 miles south,
to check on whether he could see Dotstry the following morning. Then,
he dialed the hospital and asked for one of the nurses. He explained
what he’d found: that Dotstry didn’t need a leg amputation.

“Oh, great,” the nurse replied. “The surgeon was calling and
asking about that. He called and tried to schedule one.”

Fakorede had been typing up notes at the same time, but now he
stopped. “He was trying to schedule it when?” he asked.

“He was trying to schedule it today.”

ABOUT THE REPORTING

For this story, Lizzie Presser spent over a month in Mississippi, in
December and January, speaking with dozens of patients and shadowing
doctors, in clinic and in procedures. She interviewed over a dozen
medical professionals whose work has intersected with Fakorede’s,
including nurses, limb-salvage specialists, primary care providers and
the hospital’s consulting surgeon, Dr. Roger Blake, who corroborated
all facts related to his treatment plan for Henry Dotstry. She asked
Bolivar Medical Center if it believed it provided Dotstry with
adequate care. Even with Dotstry’s permission, the hospital declined
to comment on his case, citing patient privacy.

The scenes in the story are informed by her own observations and
interviews with the subjects to fill in details, including their
thoughts at the time.

To put her observed reporting into national context, she reviewed the
salient medical research and interviewed more than a dozen experts in
all corners of the health care system, from those who treat diabetic
patients to those who inform and set policies around care.

Lizzie Presser
[[link removed]] covers health,
inequality and how policy is experienced for ProPublica.

Benjamin Hardy
[[link removed]] contributed
research to this story. Maps by Lena Groeger
[[link removed]]. Design and
production by Jillian Kumagai
[[link removed]], Agnes Chang
[[link removed]], and David Sleight
[[link removed]].

_ProPublica is a nonprofit newsroom that investigates abuses of
power. Sign up [[link removed]] to receive
our biggest stories as soon as they’re published._

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