Frank Houseal knew how dangerous diabetes can be.
Both of his parents had it. His mother died at 52 of a heart attack. His father had a stroke at 47 and had lost both legs to amputation by the time he died at 65.
The genetic cards were stacked against Frank, a big man with a big, outgoing personality. He weighed 120 pounds in first grade. He’d put on another hundred by the time he left high school and then more as the stresses of adult life piled up. As a young, 6-foot-2 man, he felt “invincible.” As an older one, he lost — and regained — 20 or 30 pounds countless times. He’s had diabetes for at least 20 years. He would have had weight-loss surgery 10 years ago if his insurance covered it.
Now 64, he is recovering from his second amputation: He’s lost two toes to the disease.
As America’s epidemic of obesity continues, Type 2 diabetes has become so common that it’s easy to forget how serious a disease it is. When habits don’t change, when blood sugar control is spotty, when patients have had diabetes for many years, diabetes can lead to heart attacks and strokes, kidney disease and blindness. But even for people who have witnessed its ravages in family members, there’s something about an amputation that really brings home how insidiously destructive diabetes is. The same inflammatory processes that destroy blood vessels and nerves in legs and feet are at work in vessels, nerves, eyes, and internal organs everywhere.
"It's a total insult to the body," said Eric Choi , chief of vascular and endovascular surgery at Temple University's Lewis Katz School of Medicine.
Amputation rates among people with diabetes in the United States dropped for about 15 years, but recent reports issued by the U.S. Centers for Disease Control and Prevention highlight a disturbing trend:Amputation rates have been rising in people under 65 with diabetes since 2009. The trend was particularly strong for so-called minor amputations of toes and feet, which rose by 62 percent between 2009 and 2015. But major amputations — those done above or just below the knee — were also up by 29 percent. The trend was more pronounced in men than women. Improvements in amputation rates for older Americans leveled off.
Because many amputations could be prevented with a healthy lifestyle and good medical care, experts say this recent rise in the last-ditch procedure is worrisome. It may reflect serious shortcomings in a health system — a country — beset by inequalities that affect access to doctors as well as the support needed to make major lifestyle changes and follow doctors’ orders precisely. Even well-insured patients like Houseal with good access to doctors may need more help than they’re getting to fight a powerful, complex disease.
Amputation “is one of the most feared complications for people with diabetes. It’s a major outcome that affects quality of life and functioning,” said Edward Gregg, chief of the epidemiology and statistics branch at the CDC’s division of diabetes translation. “It’s a sentinel indicator for us of how things are going in diabetes care. If amputation rates are going up, it raises red flags for us.”
There are other troubling signs. In diabetes patients under 65, hospitalizations for heart attacks, strokes, and hyperglycemia are also up, according to one of Gregg’s studies, which was published in April in the Journal of the American Medical Association. Improvements in those complications have also leveled off among older adults.
Houseal, a Plymouth Meeting man who designs and builds overhead cranes, was diagnosed with diabetes at 44 when he needed heart bypass surgery. He lost his left big toe about three years ago, raising the specter of his father’s disability. "Now it’s my turn,” he thought. “The thought of losing a limb drives me nuts.”
He didn’t know then that he had circulation problems in his leg. He wishes he had because earlier vascular surgery might have prevented the second amputation. This winter, the third toe on his left foot turned black and blue, a sign of gangrene. His doctor sent him to Einstein Healthcare Network, where he was seen by vascular surgeons and partners Rashad Choudry and Evan Deutsch.
They discovered that his left iliac artery was completely blocked not far below his belly button. There was no hope of saving the toe, but restoring better blood flow to his leg would give Houseal a better shot at healing after the toe was removed, and at keeping his foot.
In late February, Choudry tried to open the blockage with nonsurgical techniques, but the obstruction was too long and too hard. After making sure Houseal’s heart was strong enough for surgery, Choudry brought him back for a leg bypass on March 18. He tunneled an 8 mm tube of polytetrafluoroethylene (PTFE) from Houseal’s right to left femoral artery, connecting below the blockage. It was the surgical equivalent of creating the horizontal bar in the letter A. When Houseal awoke, his foot already felt different.
On March 22, Deutsch performed the amputation, cutting below where it looks like the toe joins the foot to avoid pressure points.
Of course, Choudry and Deutsch do not enjoy doing amputations. Choudry tells residents: “I want you to hate amputations. … It is a necessary evil that we do that helps people and hopefully gets them back to their lives.”
Deutsch wishes no one needed them. “A lot of our patients, the diabetes goes untreated or uncontrolled or undiagnosed because they don’t get appropriate primary care. … By the time we get them, the die is already cast.”
Choudry, who is chief of vascular surgery at Einstein, says procedures like the ones Houseal received buy patients time. How much depends on whether they can change their habits. Amputation is a powerful wake-up call.
About 11 percent of New Jersey and Pennsylvania adults have diabetes, just shy of the national average of 12.2 percent. According to the Pennsylvania Department of Health, the rates are considerably higher for people who did not graduate high school and make less than $15,000 a year. Prevalence of the disease rose from 95 per 1,000 adults in 2011 to 106 in 2017 in Pennsylvania.
Ronald Renzi, a podiatrist at Abington Hospital-Jefferson Health, ran the numbers on amputations for all causes and found big racial and geographic disparities in the region. Black men were 2.7 times more likely to get an amputation in Philadelphia and the Pennsylvania suburbs than white men. The procedure was much more common in the region’s poorer, urban areas.
An Inquirer analysis of data from the Pennsylvania Health Care Cost Containment Council found that amputations for diabetes in patients of all ages increased in the Philadelphia region from 1,390 in 2009 to 2,741 in 2016. During that time period, major amputations for diabetes trended upward, from 422 to 579, and minor amputations more than doubled, from 968 to 2,162. A change in the way procedures are coded for payment purposes may have affected totals in the last two years.
According to the American Diabetes Association, 30 million Americans have diabetes and an additional 84 million have pre-diabetes, which puts them at high risk for full-blown disease. People with diabetes have too much sugar in their blood. In Type 2 diabetes — the most common form — the body makes insulin, but can’t use it properly. In Type 1 diabetes, which affects less than 5 percent of diabetics, the body does not make insulin.
People with both types may need to take insulin, and both face serious complications, including amputation. A family history of diabetes, obesity, and lack of exercise raise the risk of Type 2 diabetes. Blacks, Hispanics, American Indians, and Asian Americans are all more susceptible to diabetes than whites. The risk for complications rises with poor blood sugar control, high blood pressure, high cholesterol, and smoking. Vascular surgeons are especially adamant about the need to stop smoking. Weight loss and exercise can also reduce risks, though many patients find that weight loss can be especially difficult on some diabetes medications, but possible.
Diabetes causes a combination of nerve and blood-vessel damage that can lead to amputation. The nerve damage makes feet less sensitive, so people may not feel a cut or blister. The wound then doesn’t heal properly because there isn’t enough blood flowing to the injured area. People may also experience serious pain just because of inadequate circulation in the legs. “You’ve got traffic jams all the way down,” Choudry said.
Gregg said the upward trend in amputations and heart disease needs more study. But he and other experts suggest a long list of factors that could be fueling the disturbing data.
For one thing, it is possible that doctors are doing more foot and toe amputations in an effort to prevent bigger, more disabling amputations.
Another likely culprit is that Americans are getting diabetes at younger ages. Though people over 65 have the highest rates of Type 2, in recent years more than half of newly diagnosed cases are in younger adults. All told, an estimated 30 million Americans have diabetes.
Millennials are an exceptionally heavy generation with relatively high smoking rates. Plus, Gregg said, “We’ve known for a long time that younger adults with diabetes are less likely to have good continuous care and, even when they have care, their risk factor control is not good.”
People also have been surviving longer with the condition, giving diabetes-related problems a chance to pile up. “If they don’t get a stroke or a heart attack first and live long enough, they’ll most likely develop some sort of peripheral artery disease,” said Joseph Lombardi, a vascular surgeon with Cooper University Health Care.
From a financial standpoint, the uptick in amputations coincided with the 2008 recession. Financial hardship disproportionately affected communities with high diabetes prevalence. High-deductible insurance plans, which are particularly common among younger and middle-aged workers, may deter preventive care.
“I saw a woman the other day who has a $14,000 deductible,” said Lisa Fish, a Minneapolis endocrinologist who is a past president of the Endocrine Society. A $3,000 deductible — still plenty high — is more typical.
While the high price of insulin has gotten a lot of attention, Fish said people are struggling to afford other drugs that are more important for controlling Type 2 diabetes earlier in its course. Insurance-plan drug formularies change frequently, leaving patients with gaps in treatment as they switch medications. “I do think that people are losing control of their diabetes for stretches of time during the year,” she said. Coverage for foot exams and visits to podiatrists also often needs improvement.
To make matters worse, there’s a shortage of endocrinologists like Fish, the specialists best equipped to treat the most challenging diabetes cases. Mark Schutta, director of the Penn Rodebaugh Diabetes Center, said the primary-care doctors who see the vast majority of diabetes patients are overwhelmed. His practice has started an e-consulting service and is piloting telemedicine. He advocates for embedding endocrinologists in large primary-care offices and has started a diabetes training program for primary-care doctors.
Vascular surgeons and podiatrists who work in this region’s poorer neighborhoods, where amputation rates are higher, say they have been focusing more of their efforts on prevention. Patients at high risk get frequent foot exams, meticulous wound care, and procedures that can reopen clogged arteries. Sometimes, though, that’s not enough.
Doctors said amputation patients need better education and more care, but the complexity of their lives often gets in the way.
Jane Pontious, a podiatrist and professor at the Temple University School of Podiatric Medicine, said some of her patients struggle with paying bills, buying food, or finding a place to live. Some have addictions. “They’re trying to survive,” she said. “Sometimes they don’t get here right away.” Sometimes, she said, she doesn’t see them until “they get blood on their socks, they smell something, or they don’t feel good. That’s very common.”
Choi said his suburban patients often know little about amputation, but African Americans in North Philadelphia know enough to be terrified. “They know it right away,” he said. When diagnosed, they say, ‘Oh my God, I’m going to lose my leg.’ He thinks that fear makes some African American men delay seeing a doctor. “They specifically will say to you, ‘I knew it was going to lead to an amputation,’” Choi said. The tragedy is that he often could have helped if they had come earlier.
Renzi is trying to change attitudes with his Save Your Sole program. He said most people are in bad vascular shape by the time they need a toe amputated. “They likely have multiple sites of atherosclerosis,” plaque buildup in arteries that restricts blood flow. Intervention needs to start earlier. He educates black men in churches and community settings about their higher risks and the importance of good diabetes care.
In April, Cynthia Newell waited at Temple University Hospital while her husband of five years, Darryl Newell, 54, recovered from a leg amputation. He was too tired to talk. She wished he had taken better care of himself before they met. He lost weight after she improved his diet. “I make him do what he has to do,” she said. “I don’t want him dying on me.” The Yeadon man said he’s doing well now and looking forward to being fitted with a prosthesis when he has healed enough.
Even though she had a healthy respect for diabetes, she was not expecting him to lose two toes and then the leg. “I didn’t realize how dangerous it was.”
Nearly three months after his surgery, Houseal is still healing, but normal life is again in sight. At a recent follow-up visit with Choudry, only a narrow crevice at the amputation site still needed to heal. At a visit in April, the site was more deeply indented and oozing. With the help of modern ointments and meticulous wound care from Houseal’s wife, Liz, he’d made great progress.
It helped, Choudry said, that Houseal was taking his health problems seriously. Even before the latest toe went bad, his cardiologist had given him some tough love about his weight, which was then around 400 pounds. "You're not going to have any quality of life," the doctor told him. "What do you want to do?"
Houseal is now seeing a nutritionist five times a year and is down to 345 pounds. He really didn’t understand what healthy eating meant before. He wants to lose at least an additional 50 pounds and would still consider bariatric surgery — shown to improve insulin levels even before significant weight loss occurs. He’s back at work. Now that his leg feels better and he has the go-ahead to wear normal shoes, he’s eager to exercise more.
Choudry said Houseal is a “poster child” for what vascular surgeons like to see in their patients. “You’ve hit every one of our goals,” he told Houseal.
Houseal is bursting with pride that his two sons had gastric bypass surgery. Each has lost 125 pounds. One is now running 5Ks. “Those guys looked at me and they said, ‘It ain’t gonna happen to us, Dad.’ ”