The Black American Amputation Epidemic Pt IV
“This story represents a view of how our population in poverty areas of the south are being decimated with removal of limbs to take care of diabetes disease instead of finding solutions to the problem. Some information provided could cause a sickening feeling to some but graphic dialogue is necessary.”
Dr. Fakorede tested them, he found peripheral artery disease, in which clogged arteries in the legs limit the flow of blood. Continues On:
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 spends more 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 do you think your feet look like that? Why do 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 weren’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.
Sandra Wade. “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.”
