Dec. 9, 2021 -- When the toes connected his near ft turned black, Anthony Sambo knew what it meant.
Three weeks earlier, successful December 2020, the Filipino caregiver caught what helium assumed was a cold; the engaged Chicago dialysis halfway wherever helium worked had stayed unfastened passim the COVID-19 pandemic since it is an indispensable work for patients with kidney failure. Two days aft Sambo started coughing, helium was diagnosed with COVID-19. Four of 9 co-workers got it, too.
So began the travel that would pb Sambo to walk astir of that wintertime successful the hospital. During that time, the novel coronavirus not lone plagued his lungs, but besides wreaked havoc in his blood: The microorganism is known to cause clots that artifact humor travel done arteries, including those successful the legs and feet, which tin pb to amputations. By the clip helium was wheeled retired of the installation successful February 2021, he’d mislaid 3 months of his life, 20 pounds successful weight, 5 toes, fractional his foot, and his quality to walk.
Back astatine home, surrounded by guitars and rosaries, Sambo felt “lucky … for having lived done it,” helium says, “and that, astatine the extremity of the day, I lone mislaid a foot.”
However, the Desert Storm veteran’s conflict for endurance arsenic a caller amputee was lone conscionable beginning. Almost a twelvemonth aboriginal -- owed to a operation of pandemic delays, security snafus, and miscommunications -- he’s inactive surviving without a prosthetic limb, each but immobile.
For the 500 Americans who get amputations each day, the process is not the end. Living without a limb is more physically demanding and places a batch of strain connected the heart. That accent is 1 of the galore reasons that nearly three-quarters of amputation patients whitethorn die wrong 5 years. Physical therapy to information the bosom and prosthetic attraction to reduce vigor usage are captious for amputees to past and thrive.
But getting this benignant of attraction is nary tiny errand.
Physical therapy tin alteration successful prime and quantity. Rehabilitation facilities whitethorn not beryllium disposable locally, and at-home rehabilitation whitethorn not beryllium feasible. And immoderate oregon each treatments whitethorn not beryllium covered by insurance. Navigating the satellite of prosthetics is an obstacle course by itself.
During the pandemic, the obstacles were adjacent higher arsenic beds astatine rehabilitation facilities were filled by patients with COVID-19 and the offices of doctors, therapists, and prosthetists closed.
“The attraction of amputees is successful the acheronian ages, and COVID lone made the acheronian ages darker,” says Demetrios Macris, MD, a vascular surgeon successful San Antonio, TX.
Referring to the delays successful care, “every week mislaid adds up,” helium says. “Sitting down for the remainder of your beingness -- that’s a look for disaster.”
Lost successful the System
More than 250 miles eastbound of San Antonio, Red Nash sat for astir a twelvemonth and a half.
Her saga began successful the summertime of 2018, with a cramp that wouldn’t spell away. The Galveston, TX, autochthonal saw doc aft doctor, who sent her location with symptom pills and pep talks.
Nash went from walking connected 3 legs (with a cane) to 4 legs (crutches) to not walking astatine each (a wheelchair). She discontinue her occupation arsenic a manager astatine a leather wholesaler, incapable to instrumentality inventory, hoist products, oregon locomotion crossed the 2,000-square-foot store. In May 2019, her ft turned black, and a period later, Nash mislaid her leg. Her archetypal cramp was a grounds of peripheral artery disease, which causes the vessels that transportation humor from the bosom to the legs to constrictive oregon get blocked.
The surgical coiled grew infected, and Nash spent the adjacent 4 months successful and retired of consciousness. In November 2019, Texas Medicaid denied her a prosthesis; she appealed, and successful March 2020 the programme denied her again. (Texas Medicaid does not cover prosthetic limbs for adults.)
In August 2020, aft “throwing a dart astatine a map,” she moved to North Carolina. A period later, she was approved for the prosthesis, and successful November 2020, she started carnal therapy.
On a pandemic-era New Year’s Eve, she received her caller close leg, lasting connected 2 feet for the archetypal clip successful 17 months.
Once amputees person recovered from surgery, U.S. Department of Veterans Affairs guidelines urge that patients similar Nash beryllium discharged to a specialized rehabilitation facility.
These facilities are captious for helping amputees similar Nash and Sambo get backmost connected their feet, says Alberto Esquenazi, MD, a rehabilitation medicine doc astatine Temple University. They tin backmost the coordination of attraction crossed the wide of providers, helium says, alternatively than “putting it each connected the amputee.”
Indeed, studies person recovered that those discharged to a rehabilitation installation are more apt to person a prosthesis, usage their prosthetic limb much often, and walk sooner; and they are little apt to require different amputation, compared to those discharged location oregon to a skilled nursing facility. Historical information shows that getting bully rehab attraction aboriginal besides increases the likelihood of surviving much than a year.
“Coordinated attraction saves money, time, effort, surely the aggravation of the patient, and perchance lives,” Esquenazi says.
But during the COVID-19 pandemic, excessively often these facilities closed their doors to amputees.
Across the country, many were transformed into “overflow” units amid viral surges. That meant successful places similar Burke Rehabilitation Hospital successful the Bronx, NY, -- which is close adjacent to New Rochelle, 1 of the nation’s earliest blistery spots -- therapy gyms became makeshift wards lined with gurneys and oxygen tanks.
Meanwhile, rehabilitation facilities that stayed unfastened were each but retired of scope for amputees for months, Esquenazi says.
According to Medicare claims information analyzed by ATI Advisory, a wellness attraction probe firm, betwixt March and December 2020, thousands of COVID-19 patients were discharged to rehabilitation facilities, arsenic nursing facilities were overwhelmed. In part, the displacement was prompted by emergency measures enacted by the Centers for Medicare and Medicaid Services (CMS).
“Facilities were conscionable not taking [amputees],” Esquenazi says. “So those patients went location -- and, astatine home, they tended to beryllium there, waiting.”
Missing the ‘Window of Opportunity’ for Rehabilitation
For those discharged location similar Nash, early, intensive, and regular carnal therapy is cardinal to recovery.
Lots of things tin spell incorrect soon aft country to forestall amputees from walking again, says Kelly Kempe, MD, a vascular surgeon astatine University of Oklahoma.
As muscles spell unused, they tin shorten and tense up, freezing up the residual limb. Painful pressure ulcers tin develop, sentencing amputees to bedrest until the sores heal. Blood clots, pneumonia, and urinary infections tin crook a hard betterment deadly, Kempe says.
“In bid to support a prime of beingness with independence, arsenic good arsenic to trim the patient’s hazard of aboriginal death, rehabilitation is an implicit must,” she says, “it is simply a substance of beingness and death.”
The life-saving imaginable of carnal therapy for amputees is particularly important successful airy of what experts notation to arsenic the “critical window.” Starting rehabilitation soon aft infirmary discharge has been shown to improve patients’ independence astatine home. And short-term delays successful rehabilitation have besides been linked to a little likelihood of walking successful the agelong term.
“By waiting, you’ve missed that model of opportunity, and you can’t get it back,” Esquenazi says.
Yet, probe from Veterans Affairs hospitals shows that only 65% of vets with lower-extremity amputation person outpatient rehabilitation wrong a year, adjacent though the VA has guidelines recommending carnal therapy, protocols to usher its use, and covers the outgo of services.
During the COVID-19 pandemic, “many radical who mightiness person gone to rehab successful mean times went home,” says Olamide Alabi, MD, a vascular surgeon astatine Emory University successful Atlanta. It’s besides unclear whether these radical received the due resources due to the fact that “home wellness PT is deed oregon miss,” she says.
And that’s assuming you tin get it. Surveys done by the American Physical Therapy Association (APTA) amusement that, arsenic of May 2021, 30% of therapists had been laid off, furloughed, oregon resigned successful the past year. A 4th of outpatient practitioners had chopped their hours. Almost fractional of outpatient clinics had closed astatine immoderate point.
The ‘Foreign Universe’ of Prostheses
In summation to functioning muscles, amputees besides request prosthetic limbs to assistance enactment upright. Walking independently connected prostheses tin amended the wellness and well-being of amputees a large deal, Alabi says.
A study from the 1990s, following 400 amputees implicit 5 years aft completing a rehabilitation program, recovered that those who stopped utilizing their prosthetic limbs were little apt to beryllium capable to execute basal tasks specified arsenic walking alone, climbing stairs, oregon getting up from the level aft a autumn than regular users. Another study, of much than 4,500 seasoned amputees, recovered that those who did not get a medicine for a prosthetic limb were much apt to dice wrong 3 years of their country than those who got a prescription.
Getting a prosthetic limb, arsenic Red Nash knows, takes nary tiny magnitude of work, particularly for those who aren’t portion of the VA oregon covered by Medicare. (Sambo, who is simply a veteran, receives astir of his attraction extracurricular the VA and has not yet pursued prosthetic attraction done the system.)
To person Medicaid, patients indispensable archetypal suffice for disablement -- a process that takes months. According to the Kaiser Family Foundation, many states, specified arsenic Texas, not lone restrict which Medicaid patients tin get prostheses, but besides dictate when, which type, and however galore they tin get.
Those with backstage security look hurdles too. While prosthetic limbs are an “essential wellness benefit” successful astir each states -- meaning that they indispensable beryllium covered by insurers -- according to the Amputee Coalition, restrictions, caps, and exclusions stay common.
Such frustrations -- hold times, transferred calls, mislaid faxes -- tin shackle amputees to their beds, wheelchairs, and walkers indefinitely.
Getting mislaid successful the strategy is each excessively communal for caller amputees, says Kempe. They trust connected galore providers for attraction -- doctors, coiled specialists, podiatrists, physiatrists, prosthetists, carnal therapists -- and coordinating each the services they request crossed disciplines and departments tin beryllium a gangly task for those stuck, horizontal, successful bed.
In San Antonio, Macris’s patients are likewise challenged: Navigating these institutions is similar crossing into “a overseas universe” for caller amputees, helium says.
And aft navigating analyzable security policies, determination remains the pugnacious process of uncovering a prosthetist.
That narration is critical: “They volition get to cognize you successful a mode not galore others will,” says amputee Mary White, since prosthetic limbs necessitate predominant modifications, repairs, and replacement -- particularly successful the aboriginal months aft surgery.
After a motorcycle mishap connected Memorial Day play of 2019, White mislaid her near limb beneath the knee. The “lower 10 centimeters of [her] limb were turned into particulate and powder” from the collision, White says, and she needed a tegument graft and 6 months to heal. (The coiled looked similar “the bride of Frankenstein,” she says.) In November 2019, she met with her archetypal prosthetist.
But erstwhile the wraps helium prescribed caused redness and pain, she got a second opinion. In March 2020, she received her archetypal prosthetic limb, but a mates of weeks later, the surgical coiled resurfaced. After galore attempts to refit the prosthesis, she switched again. In August, a caller prosthetic limb; successful September, a caller wound. By October 2020, the prosthesis didn’t fit. To date, White’s tally done fractional a twelve prosthetists and 20 impermanent legs
Such struggles aren’t unusual, says Yitzhak Langer, a Maryland-based prosthetist with Presque Isle Medical. By making in-person attraction harder for radical similar White to receive, the pandemic apt lone made the challenges worse, helium says.
Getting the socket to suit the limb and getting the sole decently aligned with a patient’s gait is complicated, helium says. As patients’ wounds heal, swelling eases, value fluctuates, and scar insubstantial forms. In his tomato-red truck, Langer drives hundreds of miles per week up and down the Atlantic coastline to drill, wrench, saw, grind, bevel, and glue legs to a cleanable fit.
Ensuring a cleanable acceptable isn’t simply cosmetic, Langer says. It’s indispensable to support traumatic residual limb and phantom limb symptom astatine bay -- symptom that plagues astir amputees -- and tin thrust them to abandon their prosthesis altogether. Limb pain tin besides lead to depression, which is already prevalent among amputees.
That “building up of hopelessness is precise dangerous,” says Langer, since it tin go a vicious rhythm of further immobility caused by amputees thinking, “‘OK, possibly I’m ne'er going to locomotion again.’”
A atrocious acceptable whitethorn pb to tegument breakdown, wounds, and caller infections, Langer says. And poorly fitting prostheses tin increase the hazard of perchance debilitating falls.
Despite the benefits of prostheses, immoderate studies amusement that barely fractional of amputees get them aft surgery. During COVID-19, the canyon betwixt amputees and prosthetic attraction was adjacent wider, Langer says, particularly aboriginal on.
For months, helium couldn’t get into nursing homes oregon rehabilitation facilities. Disability qualifications were delayed. And adjacent for patients helium was successful interaction with, visits were sporadic: Ever-changing COVID caseloads led to rainfall checks and cancellations.
All told, astatine Presque Isle Medical (which sees hundreds of patients a month), sojourn measurement fell astir 50% from March done July 2020, compared to the erstwhile year. According to VA data, the fig of patients receiving caller above- oregon below-the-knee prosthetics decreased 20% and 25%, respectively, betwixt 2019 and 2020.
So, for months, patients similar Mary White and Anthony Sambo were each but connected their own.
Beginning successful August 2020, the visits picked up again, skyrocketing successful September, according to Shlomo Heifetz, Presque Isle Medical’s manager of operations. As of October 2021, the fig of yearly visits remained 20% higher than the 2019 baseline. “It was similar a waterfall, the dam broke loose,” says Heifetz. “There was a tremendous influx of patients who had conscionable been sitting there, awaiting care.
“It wasn’t that the patients weren’t there,” helium says, “it was that they couldn’t beryllium treated.”
For Mary White, the fits and starts to her post-amputation attraction took their toll. In April 2021, aft receiving different prosthesis, she stuck her toes successful the soil for the archetypal clip successful years on the shores of New Hampshire. “Please don’t springiness up,” she wrote to different amputees successful a Facebook enactment radical astatine the time, “keep astatine it!”
But aft different abscess formed, White is backmost successful a wheelchair. She thinks that much accordant connection with prosthetists mightiness person changed however her saga played out.
“It’s truly hard erstwhile you’ve clawed your mode to the top, doing everything you were doing before,” she says, “and past you’re shoved off, lone to find yourself astatine the bottommost again.”
Structural Racism successful Prosthetic Care
Along with the challenges of post-amputation attraction are the injustices that enactment underserved communities astatine adjacent higher risk, Alabi says.
A survey of astir 10,000 veterans recovered that African-American patients are less apt to beryllium prescribed prostheses than achromatic patients.
“Do you deliberation it’s thing astir the Black amputation stump that makes it incapable to acceptable successful a prosthetic?” says Alabi, “No: There’s thing other going connected there, apt related to structural racism.”
Sean Harrison, a diligent advocator for the Hanger Clinic -- the country’s largest prosthetic supplier -- witnesses it each day.
Harrison, who is simply a Black amputee, travels hundreds of miles each week done the California sunshine to measure patients’ betterment presumption and needs. And excessively often, Harrison says, the likelihood are tilted against amputees of color.
“When you person idiosyncratic who doesn’t spot a strategy that has failed them truthful galore times -- and past you inquire them to engage, to travel back, implicit and implicit -- that’s not a look for success,” helium says.
Another consideration unduly afflicting amputees of colour is poverty. When it comes to recovery, “income equals outcome,” helium says: sterile bandages, cleaning supplies, and information instrumentality each outgo wealth these individuals can’t spare. For radical successful poverty, Harrison says, “it’s similar the strategy is acceptable up to fail.”
The aforesaid is existent successful Texas: Three-quarters of the applications to the Prosthetic Foundation -- a nonprofit that funds prosthetic services for amputees successful request -- are middle-aged Hispanic men, according to the organization’s enforcement director.
Another root of structural racism whitethorn beryllium the “K-level” strategy of classifying amputees (otherwise known arsenic the “Medicare Functional Classification Level”).
K-levels were primitively developed to foretell the functional level for a fixed amputee, says Robert Gailey, PhD, a prosthetist and prof astatine the University of Miami who sat connected the archetypal Medicare committee that started the measure. The prosthetist assigns each diligent a K worth by taking into information their history, “desire to ambulate,” and existent condition.
But determination is nary modular mode to measure these potential functional abilities.
“It’s truly up to clinicians to specify however they privation to find it,” says Matthew Major, PhD, a prosthetist and subordinate prof astatine Northwestern University, leaving the evaluations susceptible to subjectivity.
More objective measures, such arsenic whether the idiosyncratic tin get retired of a seat oregon however agelong it takes them to locomotion a circumstantial distance, are reliable, but surveys suggest that galore prosthetists do not usage them routinely when assigning K-levels. Perhaps arsenic a result, the reliability of the K-level has travel into question. A survey of implicit 200 prosthetists that Major co-authored recovered that two-thirds of respondents didn’t judge that K-levels accurately delegate rehabilitation potential.
As such, erstwhile insurers usage K-levels to ration precise costly prosthetic equipment, things get particularly problematic, Gailey says. (Most insurers, not conscionable Medicare, usage the scoring system.)
For example, below-the-knee amputees indispensable people a “K3” to beryllium eligible for a high-tech prosthetic -- a instrumentality that tin outgo tens of thousands of dollars. But successful one tiny study, amputees who would not person qualified for the much costly prosthetic based connected their assigned K people fell little with this instrumentality and improved their walking abilities truthful overmuch that they “graduated” to a amended K score. Similar improvements were seen with K2 ft amputees who were allowed to bid connected K3 prosthetic feet.
Prescribing lower-functioning instrumentality based connected assigned K people becomes a self-fulfilling prophecy, Major says, due to the fact that “when you delegate idiosyncratic a K2, and you springiness them K2 technology, they volition behave similar a K2.”
Gailey agrees: A small survey helium led with 16 seasoned amputees recovered that aft 8 weeks of rehabilitation, astir graduated an full K-level supra their baseline rating.
“There are a batch of people, particularly those successful impoverished areas of the country, who would payment if fixed a amended accidental with the due prosthetic devices,” helium says.
“There is ever the imaginable … to go a unfortunate of implicit bias,” Gailey says, “which could person a immense antagonistic interaction connected patients and their rehabilitation.”
A 2017 Consensus Statement by the Centers for Medicare and Medicaid Services Lower Limb Prosthetic Workgroup called for much probe into the question, but truthful far, the options for K2-scoring amputees stay limited.
“Amputation probe successful wide has been focused connected achromatic men,” says Sheila Clemens, PhD, an adjunct prof and carnal therapist astatine Florida International University.
There hasn’t been overmuch probe evaluating disparities successful post-amputation outcomes since the VA serves arsenic a large backing source. But a tiny survey that she ran during the pandemic (shared with WebMD, but not yet published) supports Gailey’s and Harrison’s observations: Amputees of colour took importantly longer to get up from a seated position, and they could not locomotion arsenic acold successful 2 minutes arsenic achromatic amputees.
With these information successful hand, Clemens says, “we present cognize that what we thought is happening, is happening.”
A One-Woman Amputee Hotline
In immoderate corners of the country, providers are moving hard to effort to forestall these seemingly inevitable disparities.
After attending undergraduate and aesculapian schoolhouse successful New Orleans, vascular surgeon Leigh Ann O’Banion, MD, decided to instrumentality location to “give backmost to a assemblage that’s fixed truthful overmuch to me.”
Growing up successful California’s fertile Central Valley, she would adjacent retired the model of the car connected her mode to schoolhouse to spot the workers toiling successful the fields amid the blazing summertime vigor -- picking, trimming, and packing the nutrient that mightiness soon find its mode connected an 18-wheeler owed east. By feeding the state 1 bushel astatine a time, she realized that these workers “are the ones keeping each of america alive.”
O’Banion knew determination was a request to assistance amputees aft country due to the fact that erstwhile she spoke with colleagues astir the country, often “there was thing successful place” she says.
“Patients were getting their legs chopped off, discharged from the hospital, and told, ‘Let’s conscionable spot however things go,’” she says
These disparities are wherefore O’Banion spearheaded the instauration of a broad programme for caller amputees to guarantee they person intensive rehabilitation, outpatient carnal therapy, and regular prosthetic attraction aft surgery.
“Having random pieces successful spot … and expecting them to each magically travel together, that conscionable doesn’t work,” she says, “that’s wherever the ball’s dropped.”
In the effort to forestall disability, carnal weakness, and fatality, 1 of the astir important benefits of O’Banion’s programme is simply giving amputees a fig to call.
Jessica Dodson, the program’s caregiver coordinator, is astir ever the dependable astatine the different end. The self-proclaimed “one-woman hotline” makes definite patients person proscription to their appointments, that things are squared distant with insurance, that the carnal therapist really came, and that the prosthetic is fitting properly.
“Give maine a call, I americium here,” she tells patients.
But still, Dodson worries astir each the patients who don’t call, oregon don’t answer.
“There are truthful galore complications [that patients] tin tally into,” she says. “Not having idiosyncratic to telephone tin termination patients.”
During the COVID-19 pandemic, O’Banion fears for each those who didn’t telephone and didn’t answer. Rehabilitation, carnal therapy, and prosthetic attraction “came to a screeching halt,” she says.
Family enactment vanished due to the fact that of concerns astir the dispersed of the virus. Financial burdens, amid furloughs and layoffs, loomed. As a result, “too often, [patients] conscionable gave up,” she says. “I deliberation the patients were fundamentally conscionable getting mislaid and forgotten about.”
Harrison, the diligent advocator successful California, agrees: “I spent 16 months conscionable trying to find my patients,” helium says. “When you’re hopping connected 1 limb crossed the river, determination are truthful galore opportunities to autumn disconnected the lily pads successful mean times,” helium says. With the added hurdles during COVID-19, “it was decease by 1 1000 cuts,” helium says.
And for Alabi, successful Atlanta, contempt “a precise concerted effort to guarantee radical weren’t mislaid successful the shuffle” implicit the past year, her patients lacked galore of the services that could person aided their recovery. As internists’ offices closed, she recovered herself renewing regular medications, ordering screening tests, and making care-coordinating telephone calls that different mightiness person been overlooked.
Alabi worries astir the pandemic’s semipermanent interaction connected the betterment of patients of color.
“These are communities that were already disenfranchised,” she says. “[The pandemic] lone exacerbated the disparities that were already present.”
For patients similar Anthony Sambo, that means much sitting, and much waiting.
Nearly a twelvemonth aft surgery, he’s inactive waiting for a prosthetic limb. For now, he’s keeping himself engaged strumming Lewis Capaldi connected the guitar, singing Ed Sheeran connected karaoke, and playing World of Warcraft connected the computer.
But the days are blurring together, helium says: “I support doing the aforesaid happening implicit and implicit and implicit again.”
There are truthful galore things Sambo wants to do: spell to the gym, mow the lawn, works eggplant and okra successful his brother’s garden, sauté bitter melon and achromatic beans unneurotic conscionable similar their ma utilized to. Not to notation getting backmost to work, since wealth is tight.
“I’m looking guardant to walking again,” helium says, “very, precise soon.”
But, astatine slightest for now, he’s inactive sitting, waiting.
This is the 2nd successful a two-part probe addressing radical disparities related to amputations during COVID-19. The first addressed however the pandemic impacted preventive attraction aimed astatine preventing amputations. This enactment was funded by the USC Annenberg Center for Health Journalism’s 2020 California Fellowship.