by Sophie Novack
March 1, 2019
Daniel Zamora still remembers the smell. At first he didn‚Äôt realize anything was wrong. A small blister appeared on his left pinky toe where his sneaker rubbed against his skin. He had developed blisters before, but this one wouldn‚Äôt go away. First the tip of the toe darkened, slowly turning the jet-black color of his hair. Then the color spread toward the rest of his foot.
He was used to ignoring such things. It was 2016, and Zamora, now 55, had gone his whole life without health insurance. Born in Matamoros, Mexico, he moved across the border with his family to Brownsville when he was about 6 years old. For decades, Zamora, a legal permanent resident, worked maintenance jobs for low pay and no benefits. He couldn‚Äôt afford to take time off or see a doctor. Sometimes, when he wasn‚Äôt feeling well, he‚Äôd brew an herbal tea from the leaves of the moringa tree just outside his front door. He often tried curing his cuts and blisters with ointment or rubbing alcohol. Occasionally, if things got really bad, he reluctantly went to the emergency room, where, he says, doctors made snide remarks about his inability to pay.
So he waited. Maybe it would pass.
Finally, the smell got unbearable. Like road kill in the hot South Texas sun. A couple of months after the blister appeared, Zamora drove 2 miles to Valley Baptist Medical Center, where doctors quickly diagnosed him: His diabetes, uncontrolled for years, had blocked blood flow to his toe, preventing it from healing. What began as a minor blister was now a life-threatening emergency. Zamora says the doctors sent him home with medication to treat the wound, but a few weeks later he went back to the ER, where he had two toes on his left foot amputated to prevent gangrene from spreading up his leg.
Daniel Zamora, 55, was diagnosed with diabetes about 10 years ago. In 2016 he had two of his left toes amputated.¬† Veronica G. Cardenas
When Zamora found out he had diabetes, about 10 years ago, it didn‚Äôt come as much of a surprise. In the Rio Grande Valley, nearly one in three people has the disease, triple the national rate. The Valley is among the poorest and least-insured regions in the country. It‚Äôs also overwhelmingly Hispanic, a population that has a higher risk of developing type 2 diabetes.
Perhaps the most visceral indication of the Valley‚Äôs diabetes crisis is the shocking number of people living with amputations. The rate of diabetic amputations in the Valley was about 50 percent higher than the state rate in 2015, according to data from the state health agency. In Cameron County alone, where Zamora lives, hospitals recorded 281 diabetic amputations that year. That‚Äôs more than 50 percent higher than the national rate, according to the Centers for Disease Control and Prevention. The estimated amputation rate in smaller Willacy County, just north of Cameron, was more than four times the national rate. ‚ÄúGood gracious,‚ÄĚ said Ed Gregg, a CDC epidemiologist, when looking at the data. ‚ÄúWhat‚Äôs going on with Willacy?‚ÄĚ
When he first found out he was diabetic, Zamora says, he ‚Äúdidn‚Äôt pay too much attention to it.‚ÄĚ Both of Zamora‚Äôs parents died from diabetes, which is the seventh-leading cause of death in the United States. His father used a wheelchair for the last years of his life, after a diabetic amputation above the knee. In the Valley, there‚Äôs a fatalism associated with the disease, often considered an inevitable inheritance.
What Zamora didn‚Äôt realize is how big an impact a small blister would have on his life. For months after the surgery, he couldn‚Äôt walk. Nor could he afford professional wound care, so his son came by each day to change the bandage. Zamora had to quit his job cleaning a nearby gym because it required him to be on his feet and lift heavy weights. Along the way, he racked up about $100,000 in medical bills, which he‚Äôll never be able to pay. When he developed an ulcer on his other foot, he went to see a doctor in Matamoros, because it would be cheaper. Finally, last summer, Zamora‚Äôs disability qualified him for Medicaid and Medicare.
When I ask how he‚Äôs doing, Zamora‚Äôs typical response is: ‚Äúsurviving.‚ÄĚ He‚Äôs frustrated that he had to wait until he was very sick and couldn‚Äôt work to get health coverage from the government.
‚ÄúBeing diabetic is real bad‚Ä¶‚ÄĚ Zamora‚Äôs voice trails off. ‚ÄúA lot of people die from it.‚ÄĚ
He‚Äôs adjusting to life as an amputee, but he still loses his balance, wobbling ‚Äúlike an egg‚ÄĚ when he walks. That, along with vision problems due to the diabetes, makes manual labor difficult. But without a high school diploma, he has few job options. For now, Zamora is surviving on a disability check that‚Äôs even less than the $1,300 a month he made at the gym.
It‚Äôs a story told over and over again in the Valley: You don‚Äôt know you have diabetes until it‚Äôs severe, because you rarely see a doctor. You get a cut or blister but ignore it, because diabetes-related nerve damage means you can‚Äôt feel it, or you‚Äôre too busy working or taking care of your family to go to the doctor. The wound gets infected. By the time you get help, the infection is so bad that amputation is necessary. You can‚Äôt afford proper care, so sometimes the wound gets infected again. You get another amputation.
Diabetic amputations have a domino effect on the lives of patients and families. It begins with the patient exiting the workforce, sometimes decades early, ‚Äúwhich creates every complication we can think of,‚ÄĚ said Belinda Reininger, regional dean at the UTHealth School of Public Health in Brownsville. ‚ÄúThe family‚Äôs economic situation is negatively impacted; children may have to start working and supporting their parents, slowing or putting aside their educational attainment goals. ‚Ä¶ We‚Äôre already an area known for living $20,000, $25,000 below the median income of the state ‚ÄĒ to lose your wage earner is just tremendous. That‚Äôs at the family level; you magnify that to the society level and it continues to ripple.‚ÄĚ
Each diabetic amputation represents not just a personal tragedy, but a failure of the U.S. health-care system. The epidemic also suggests a possible future for the rest of the country, as the Latino population booms and health officials grapple with how to get diabetes under control. The number of adults diagnosed with diabetes in the United States quadrupled between 1980 and 2014. CDC researchers now project that the number will nearly triple by 2060.
A new study published in Diabetes Care in November found that following a two-decade decline, the rate of diabetic amputations nationwide increased in recent years, especially among young and middle-aged adults. Gregg, who worked on the study, told the Observer that though diabetes care overall has improved, the ‚Äúalarming‚ÄĚ findings are a ‚Äúwake-up call.‚ÄĚ He says amputations are important indicators that something went wrong with diabetes management, because they‚Äôre generally preventable in patients who can access diabetes education and primary care.
Lisa Mitchell-Bennett, a project manager at UTHealth, put it more bluntly: ‚ÄúWe‚Äôre literally cutting people‚Äôs limbs off, when they could just be taking medication. It‚Äôs kind of crazy in a developed country.‚ÄĚ
When patients at risk of amputation resist noel Oliveira‚Äôs instructions to stay home from work and off their feet, he has a simple response: Enjoy life one-legged! That tends to make them listen.
A family physician who‚Äôs originally from Brownsville, Oliveira opened the first wound care center in the Rio Grande Valley in the early ‚Äô90s. At his Edinburg clinic, tucked into a complex of buildings at Doctors Hospital at Renaissance, most of his patients are diabetic, with stubborn wounds that refuse to heal. He tries to prevent amputations by treating severe cases like Zamora‚Äôs. Before, diabetics had to travel hours to get this kind of care, said Oliveira, who co-founded the Rio Grande Valley Diabetes Association in 2007.
‚ÄúIn every corner of the United States, and the globe, diabetes and obesity has become a problem. In our area, it‚Äôs just magnified,‚ÄĚ he said when I visited him at his office in December. The clinic was cheerfully appointed with Christmas decorations; a shiny banner reading NOEL hung across Oliveira‚Äôs door.
Noel Oliveira at his office in the wound care clinic he opened in the ‚Äô90s, the first in the Rio Grande Valley.¬† Sophie Novack
He shows me the mementos in his office: a black T-shirt reading ‚ÄúRenaissance Rockers,‚ÄĚ the name of the band he plays guitar in with other doctors at the hospital. There‚Äôs a photo with FBI agents he treated, and another from when he served as a WWE team doctor. (‚ÄúThey don‚Äôt mess around, man.‚ÄĚ) On his desk is a Selena-themed thermos next to a DVD of Dr. No ‚ÄĒ his nickname around the clinic.
Nearly bald and sparsely mustached, Oliveira is blunt yet warm with his patients. Over the course of his career, he‚Äôs seen more wound care practices like his crop up across the Valley; coupled with medical advances, that means there are more opportunities to prevent the loss of limbs, he says. But Oliveira and other doctors describe persistent obstacles.
‚ÄúThe lifestyle in the Valley is high-work, low-income,‚ÄĚ said Oscar Corral, a podiatrist in McAllen. Dealing with devastating wounds is routine, because caring for oneself often takes a backseat to looking after family and putting food on the table.
Corral recently stopped doing amputations because it was too upsetting. He focuses now on preventive foot care. ‚ÄúEverybody‚Äôs big on the amputations, but not big on the preventive care part. They‚Äôre so busy doing hospital consults on patients that already need an amputation. ‚Ä¶ They don‚Äôt have time to do the preventive care.‚ÄĚ
When I visit Oliveira‚Äôs clinic, he‚Äôs seeing an elderly man named Israel Guerra who‚Äôs had uncontrolled diabetes for years. Like Zamora, he didn‚Äôt have health insurance until late in life, when he qualified for Medicaid and Medicare through disability. A couple of years ago, a doctor amputated half of Guerra‚Äôs left foot after blisters on his toes refused to heal. In November, he lost his right leg just above the knee. ‚ÄúThat one was his good leg, one he could rely on, walk better on,‚ÄĚ Guerra‚Äôs daughter Esmeralda says, pointing to his right leg. She holds up his left shoe, which is half-filled with foam. ‚ÄúBut now, now this one is the good one.‚ÄĚ
Guerra is at the clinic because of a small wound near his groin. He lies on the bed staring at the ceiling, pulsing his right thigh up and down. At first he didn‚Äôt want to tell the doctors he could still feel the leg ‚ÄĒ a common ‚Äúphantom limb‚ÄĚ sensation ‚ÄĒ because they‚Äôd think he was crazy. Sometimes his missing leg still itches; he tries to soothe it by scratching the air where it used to be.
Israel Guerra and his daughter, Esmeralda, who quit her job at Denny‚Äôs to help take care of her dad after his leg amputation in November.¬† Sophie Novack
It‚Äôll be months before Guerra can get a prosthetic leg. In the meantime, Esmeralda, who has a family of her own, says she left her waitressing job at Denny‚Äôs to help with his care. She tears up when I ask how it‚Äôs going. ‚ÄúHe‚Äôs very motivated. He‚Äôs actually being stronger for us than we‚Äôre doing for him.‚ÄĚ
McAllen podiatrist Joseph Caporusso, who Guerra says did his first foot amputation, told me that he performs at least one toe or partial foot amputation each week, often on repeat patients. The hope is to prevent repeat amputations through proper wound care. ‚ÄúOnce you have an amputation, it‚Äôs kind of like falling down a mountain,‚ÄĚ he said. ‚ÄúMy job is to stop it at hopefully the top of the mountain, before you fall more.‚ÄĚ
Oliveira leaves Guerra and his daughter with a set of instructions: Don‚Äôt pack the wound too tightly. Keep it clean. Move the leg so the muscles don‚Äôt atrophy. And later, when you‚Äôre back on the dance floor, no fast songs. Oliveira raises his arms to an imaginary partner and sways slowly. ‚ÄúSolo canciones rom√°nticas.‚ÄĚ Only romantic songs.
The message Oliveira gives patients is one of empowerment, to take control of their own health. He recounts a recent visit with a patient who ignored his instruction not to work while his foot healed. The man returned to the clinic weeks later with an infection that threatened to consume his foot. After Oliveira removed the gangrene, the man followed the doctor‚Äôs orders by staying home, wearing appropriate shoes and lowering his blood sugar. It looks like he will save his foot. ‚ÄúIt‚Äôs dang hard, bro, but you‚Äôve got to do it,‚ÄĚ Oliveira recalls telling him. ‚ÄúIf you want to stay two-legged, 10-toed, that‚Äôs what you‚Äôve got to do.‚ÄĚ
A few buildings over from Oliveira‚Äôs clinic, a support group meets at the hospital each month to help each other in the difficult process of recovering from and living with an amputation. Most of the participants have diabetes, including the group‚Äôs founder, Elizabeth Reynoso, whose leg was amputated in 2015 after a small cut from clipping her toenail got infected. She started the group to find people who understood and shared her experience. ‚ÄúWhen you lose your leg, it‚Äôs like losing a loved one,‚ÄĚ she said after a presentation about depression and mental illness in the November meeting. ‚ÄúThere‚Äôs anger, there‚Äôs depression, there‚Äôs sadness, there‚Äôs what-ifs, why me. You question it a lot. You need the help in dealing with that.‚ÄĚ
Diabetes is sometimes called the ‚Äúsilent killer‚ÄĚ because so many people don‚Äôt realize they have it until it‚Äôs too late. Both type 1 and type 2 diabetes can be managed with proper medication and care, but the American Diabetes Association estimates that of the 30 million people living with diabetes in the United States, nearly a quarter don‚Äôt know.
In the Rio Grande Valley, the numbers are more stark. Researchers at UTHealth estimate that nearly 30 percent of adults in the Rio Grande Valley are diabetic, and more than one-third of Valley diabetics don‚Äôt know they have the disease. Another 32 percent of Valley residents have prediabetes.
By the time people seek treatment, the complications can be devastating. ‚ÄúWhen you see people going blind, missing part of their body, down here the first thing you ask is, ‚ÄėAre they diabetic?‚Äô The majority of the time the answer is ‚Äėyes,‚Äô‚ÄĚ said David Ceron, 42, a former teacher in McAllen. He recently published an e-book called The Adventures of Exo and Cy to teach kids how to prevent diabetes through healthy diet and exercise. In his family, the disease is rampant. Ceron, his mother and all seven of his siblings have had diabetes. Three siblings had amputations; two of them died from diabetes. The third, Carmen Zuniga, 61, lost her sight, developed heart problems and last year began dialysis for 12 hours every week.
Carmen Zuniga had three toes amputated due to diabetes.¬† Sophie Novack
‚ÄúWhat‚Äôs been really shocking and disturbing is oftentimes the age these patients will present with such horrific conditions,‚ÄĚ said Christopher Romero, a doctor at Valley Baptist Medical Center in Harlingen. ‚ÄúThey‚Äôre often younger than one might expect to have developed such severe complications. So it‚Äôs probably a result not only of it being poorly managed, but also being late in diagnosis.‚ÄĚ
Even for patients who are diagnosed early in life, ‚Äúmaking it to the doctor is just the tip of the iceberg when it comes to the challenges in dealing with diabetes,‚ÄĚ said Romero.
On an unseasonably hot and sticky november afternoon, Daniel Zamora steps onto a scale in the cramped kitchen of his one-bedroom home near downtown Brownsville. ‚ÄúPobrecito,‚ÄĚ he mutters. Poor scale.
Zulema Medrano, a community health worker, or promotora, and diabetes educator at the local nonprofit Proyecto Juan Diego, laughs and scribbles Zamora‚Äôs weight in her notebook: 251 pounds. It‚Äôs gone down since their last check-in a few months earlier; that‚Äôs good news. The bad: Zamora‚Äôs blood sugar level is dangerously high, putting him at risk for more complications. Does he know why it might have spiked?
Zamora shakes his head. ‚ÄúLa comida,‚ÄĚ he guesses. Colorful fruit-and-vegetable-shaped magnets pepper the outside of his mostly empty refrigerator. On his kitchen table, next to his pile of pill bottles and blood-sugar tests, is a bag of limes, which he squeezes into water in place of soda. He‚Äôs trying to eat better, but it‚Äôs hard. Zamora‚Äôs favorite foods are ones he has eaten his whole life: menudo, enchiladas, tamales. He lists them slowly, as though dreaming up his next meal. Plus, healthy food is expensive, he says. At the corner store, he can get a plate of taquitos for just a few dollars.
Sometimes, for a bit of exercise and fresh air, Zamora takes a slow walk around his public housing complex, looping down a couple of blocks and back to his own, where, he says, he pays just over $150 in rent each month. An old bench press sits just inside the front door, stacked with papers, gathering dust.
A community health worker, Zulema Medrano, measures Daniel Zamora‚Äôs waist at his home.¬† Sophie Novack
Zamora is enrolled in the Salud y Vida diabetes program, a partnership of local nonprofits, hospitals and universities. Funded in large part through a Medicaid Section 1115 waiver from the federal government, the program serves as a bridge between individuals and the health-care system, providing home visits and blood-sugar tests every three months, and seven classes on managing the disease.
Medrano and I leave Zamora and drive north on the highway back to her office, past towering fast-food signs and strip malls that connect Brownsville‚Äôs residential neighborhoods. She sighs, ‚ÄúDaniel‚Äôs not doing good right now.‚ÄĚ Medrano decided to help diabetic patients like Zamora because her mom has had the disease for 30 years. Medrano, who has hypertension, used to be on that path too, previously weighing 200 pounds. Then she started eating better and taking Zumba classes through Proyecto Juan Diego, where she heard about the promotora job. But she no longer attends the exercise classes. ‚ÄúI‚Äôm too busy!‚ÄĚ
Medrano shares a frustration I‚Äôve heard from doctors across the Valley: People too often follow the advice of friends, family and neighbors instead of medical professionals. ‚ÄúIf they don‚Äôt help us, how can we help them?‚ÄĚ she says of patients skipping their meds or using unprescribed remedies. Part of it is cultural, Medrano explains: ‚ÄúThat‚Äôs a typical thing with us, the Mexican people,‚ÄĚ she laughs. ‚ÄúNormally with the people we work with, they believe other people and not their doctor. ‚Ä¶ They say that doctors only want their money.‚ÄĚ
But it‚Äôs hard to separate cultural explanations from systemic ones. In the Valley, health care access is often sporadic and inconsistent, and community health centers are overburdened and underfunded; many people never form lasting relationships with health professionals. Zamora has spent his life without insurance, without a consistent doctor, forgoing necessary medicine or stretching doses because of cost. And he‚Äôs survived. So why should he take two different kinds of insulin now, he wonders ‚ÄĒ is that really necessary?
Another community program aims to reach people at risk of diabetes before it gets too bad. At a makeshift clinic in the pulga, or flea market, in Alamo, nestled among booths hawking tropical fruits, used clothing and Mexican candy, health workers offer free diabetes testing and consultation. Posters about nutrition and exercise cover the turquoise walls of the clinic, which resembles an elementary school classroom. So far, the grant-funded project has screened a few thousand Valley residents. Anyone who tests positive is referred to an appointment at a low-cost community health clinic.
A makeshift clinic at the flea market in Alamo offers free screenings for diabetes.¬† Sophie Novack
When I ask doctors and advocates across the Valley how the diabetes epidemic can be reversed and amputations reduced, they point to two broad and interconnected priorities: access to preventive health care and education. Funding community programs like Salud y Vida and the pulga clinic is an important first step. But in the long term, a patchwork of grant-dependent programs and cash-strapped clinics can only do so much.
The biggest leap forward would be for Texas to expand Medicaid under the Affordable Care Act. Yet Republican lawmakers, opposed to Obama‚Äôs signature law, have repeatedly declined billions in federal funds that would extend health care coverage to about 1 million poor Texans. In the Rio Grande Valley, about 100,000 people would be newly eligible for coverage, according to a December study from the Urban Institute, a Washington, D.C., think tank.
There‚Äôs a strong economic case for better access to preventive care, too. In Texas alone, there were just over 31,500 hospital discharges due to diabetic lower extremity amputations from 2014 to 2016, costing more than $3.4 billion, according to state data. That‚Äôs an average cost of about $108,700 per amputation. Just over half the amputations were covered by Medicare. About 15 percent of the cases were uninsured patients like Zamora, where the hospitals were likely on the hook for much of that cost.
‚ÄúAnywhere we can keep people from having their first entrance into the medical system be in the emergency room, we‚Äôre saving money,‚ÄĚ said Reininger, the UTHealth dean, who pointed to health coverage and ‚Äúincentivizing prevention‚ÄĚ as important steps. ‚ÄúIf we build trails and people are more physically active, does that help? I think it does. When we do school-based interventions and we prevent kids from becoming diabetic at 14, do we save money in the long run? Absolutely.‚ÄĚ
There‚Äôs been slow progress. Communities in the Valley have started farmer‚Äôs markets, organized races and built hiking paths in recent years. But a broader shift is needed, Reininger said, in how the country prioritizes health, and how it invests now for the sake of long-term savings ‚ÄĒ of taxpayer dollars, lives and limbs.
‚ÄúWe are not going to solve this issue one foot at a time, one toe at a time,‚ÄĚ she said. ‚ÄúThat is only putting a little Band-Aid on a very big issue.‚ÄĚ
Top caption:¬†Elizabeth Reynoso, whose leg was amputated in 2015, is the founder of a support group for amputees in the Rio Grande Valley.