According to the CDC, race and ethnicity are risk markers for other underlying conditions that affect health including socioeconomic status, access to health care, and exposure to the Covid-19 virus. For example, American Indian or Alaska Natives are 4 times more likely to be hospitalized for Covid-19 and 2.6 more times to die, compared to White non Hispanic persons. Black or African American non Hispanics are 3.7 times more likely to be hospitalized and 2.8 times more likely to die from Covid-19 compared to White non-Hispanic persons.The disparate impact of the Coronavirus has drawn national attention to how public health resources are used in times of emergency. In light of these circumstances, if states were to prioritize racial minorities in public health emergencies, such as distribution of vaccines during a pandemic, for example, would that focus survive equal protection challenge? Put succinctly, can we triage public health services based on race?
As an example, California’s Covid-19 vaccination plan includes this statement: “One of the primary efforts of the Community Vaccine Advisory Committee will be to help ensure vaccine planning supports all Californians, but particularly for individuals in communities that are disproportionally impacted, including Latinos, African, Americans, Native Hawaiians, Pacific Islanders, and other Asians including Filipinos.” Will this plan pass constitutional muster?
The Supreme Court has countenanced the use of race in public programs when it is narrowly tailored to achieve a compelling governmental interest. The downside of this standard of review is that public health agencies, particularly those offering services to the underprivileged or victims of poverty, may be barred from giving preferential treatment in services to groups based on ethnicity, even if those groups may be in dire need of those services.”
Professors Schmidt, Gostin and Williams, writing on whether it is lawful and ethical to prioritize racial minorities for Covid-19 vaccines, note that “there is no direct precedent in which courts have considered race in allocating scarce health care resources. They write that “[s]trict judicial scrutiny would not permit vaccine priority strategies. First, a healthcare worker could not give priority to vaccinating persons from minority groups, for instance, by skipping White people waiting in line at a health care facility. Second, public health agencies could not provide vaccines exclusively, or in large shares, to geographic areas identified by race alone.” Nevertheless, they suggest that a vaccine distribution formula could lawfully prioritize populations based on factors like geography, socioeconomic status and housing density status that would favor minorities de facto, but not explicitly include race.”
The geographic/ proportional distribution suggested by Schmidt et al., would be consistent with other race neutral suggestions or solutions for other affirmative action-based programs, such as school admissions. In Fisher v. University of Texas at Austin, 136 S.Ct. 2198 (2016) (Fisher II), the Court affirmed diversity in higher education as a compelling state interest, and held the race-conscious admissions program in use at the time of petitioner’s application lawful under the Equal Protection Clause. We could analogize the geographical distribution to University of Texas, Austin’s use of top 10% plan, where the university used a race neutral method of equalizing the structural inequities by guaranteeing acceptance of students who graduate in the top 10% of their graduating class. This plan cures the obstacles that minorities often face in getting admitted to elite universities: parental educational background, attending under-resourced schools because they are located in economically depressed neighborhoods, kids having to work to support the family, language barriers, low socio-economic status, etc.
However, this legal analogy flounders in times of a pandemic. Unlike the school admission cases (where the lack of diversity that elite schools are trying to improve is a self-inflicted wound), Covid-19 is an emergency, a disaster of epic proportions. As of this writing, there are over 21 million confirmed cases and over 356,000 deaths in the United States. During a pandemic, there is more urgency and a race neutral alternative might not be as equally effective. For example, vulnerable populations might slip through the cracks while waiting for their priority groups. One can conclude that race-based policies have the greatest chance of passing strict scrutiny during pandemics. But will they? This will depend on how the Justices view racial inequalities during a pandemic. For example, after acknowledging the serious nature of the pandemic, Justice Kavanaugh, in his concurring opinion in Roman Catholic Diocese of Brooklyn, New York v. Cuomo writes, “[B]ut judicial deference in an emergency or a crisis does not mean wholesale judicial abdication, especially when important questions of religious discrimination, racial discrimination, free speech, or the like are raised.”
All in all, focusing on vulnerable populations in vaccine distribution is likely to succeed only if it doesn’t explicitly use racial categories. Even though using a race neutral distribution plan presents little or no constitutional challenges, if success (and here success is defined as getting the vaccine to the most neediest people to reduce the pandemic) means focusing on vulnerable groups, whether delineated by race or socioeconomic status, shouldn’t such a distribution plan be countenanced? Put differently, if admission to colleges and universities based on race can be narrowly tailored to achieve a compelling governmental interest, then surely a plan that benefits a race can be upheld on the basis of urgency due to COVID-19. Then again, maybe not. In July 2020, Oregon state lawmakers passed the Oregon Cares Fund. This state fund was meant to steer coronavirus relief money directly to black Oregonians and black-owned businesses. The state earmarked $62 million of its $1.4 billion in federal Covid-19 relief money to provide grants to black residents, business owners and community organizations enduring pandemic-related hardships. However, a Mexican-American and two white business owners sued the state, arguing that the fund discriminated against them. Although the lawsuit has not been decided yet, the outcome will have far reaching implications on any state planning to distribute vaccines or any public health services based on racial categories.
Black patients were losing limbs at triple the rate of others.
The doctor put up billboards in the Mississippi Delta.
Amputation Prevention Institute, they read.
He could save their limbs, if it wasn’t too late.
The Black American Amputation Epidemic
by Lizzie Presser
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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.
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, 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 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 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.
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.
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 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.
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 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 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 than their white counterparts; they are twice as likely to die from diabetes; they live, on average, three years fewer. 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 — 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 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 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.
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 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 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.”
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 spendsmore than $54,000 a year 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?”
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 —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.
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.”
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, along with U.S. Rep. Gus Bilirakis, a Republican from Florida, 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 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.
“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 covers health, inequality and how policy is experienced for ProPublica.