Surviving Diabetes

Watching Sandra Treviño's slow decline from diabetes, starting with the foot that stubbornly refused to heal, followed by the failing eyesight, the thinning hair, the damaged kidneys, her family members sometimes would wonder why she didn't take better care of herself.

Treviño - who was better educated than most with a master's degree in education, who as a public school teacher had decent health insurance - often ate what pleased her. She didn't always seek or demand the best medical care, didn't always take her insulin the way it was prescribed.

But through her family's eyes, and perhaps her own, diabetes was far down the list of things that defined Treviño. In fact, her daughter found it hard to reconcile her mother's ravaged body with the wise and robust woman she adored - even after her death from the disease last November.

"My mother was never really defeated by it," Frances Santos recalled. "That's how I remember it - and maybe I'm romanticizing her beauty, her spirit, her strength. She never let despair overcome her. She never felt sorry for herself."

Unlike with many diseases, the treatment of diabetes puts most of the burden of care on the patients. They're advised to eat less and differently, to exercise often, to juggle typically a half dozen or more medicines, to prick a finger regularly to measure success. Often for decades.

Many do not do all those things, or do them consistently, for very long. And so in San Antonio and across the country, some experts are rethinking the way diabetics and their doctors manage this lifelong disease. Some even are calling for a complete redesign of the way doctors deliver care.

The stakes are high. The Centers for Disease Control and Prevention said this year that a quarter of all Americans suffer either from diabetes or prediabetes - a prelude to diabetes marked by higher-than-normal blood sugar. Some prediabetics already are suffering eye and kidney damage.

Stakes are even higher in San Antonio, a Hispanic-majority city. Nationwide, 12 percent of Mexican Americans 20 and older have been diagnosed with diabetes, compared with 6.6 percent of non-Hispanic whites. Another 26 percent of Mexican American adults have prediabetes, the CDC reported. And although researchers know one in four diabetics goes undiagnosed, they have no separate estimates for Mexican Americans.

Santos, a high school teacher and poet, the wife of author John Phillip Santos, has some complex ideas about why her mother - who took great pride and pleasure in her Mexican heritage - didn't make diabetes a bigger priority.

"I begged my mother to take care of herself," Santos said. "But I think the way my mother felt empowered was not by the limitations of her body. I think empowerment is found in other ways. The body is not a temple. The spirit is the temple. And the spirit is found through family, and the spirit is found through love - going to church and family gatherings and food. It's not necessarily through the regimen of discipline."

Diabetes survivors

Living with diabetes has been likened to running a marathon - it's a disease that requires endurance and discipline over a long distance as opposed to the sprint of most acute illnesses. But even marathons have a finish line.

The constant vigilance required by patients often leads to a phenomenon called diabetes burnout - an exhaustion that sets in after experiencing setbacks despite their best efforts.

"It would be helpful if those of us with diabetes would talk about ourselves like many cancer survivors do - that we are diabetes survivors and we are trying to press on and do all we can waiting for cures to be found," said Ann Albright, director of diabetes translation at the Centers for Disease Control and Prevention.

And sometimes even the starting line can be hard to find.

Most doctors don't wish suffering on their patients, but a few have wished out loud that Type 2 diabetics felt worse than they do in the early years of the disease, when high blood sugars begin damaging nerves and blood vessels - even though the patient feels fine. Often the earliest symptoms are vague, such as frequent thirst or urination.

"Diabetes is a disease that creeps up on you, and it is easy to ignore or deny the symptoms until it is serious," said Dr. Amelie Ramirez, who heads the Center for Health Promotion Research at the University of Texas Health Science Center. "If you feel healthy, why should you continue taking your medication? This is a concept that is very difficult to get across."

While a growing number of newly diagnosed diabetics attend a class or visit with a nutritionist, many still don't. And of those who do, there's little in the way of continuing education or support.

"It shouldn't end after - oh, I've gotten my education, now I'm done," said Dr. Jacqueline Pugh, who studied how diabetes care is delivered until leaving the health science center to join a private diabetes clinic this year. "That whole model has bugged me for a long time. I much prefer the model where you see your educator every time you see your doctor, and you're working on a new piece each time."

While burnout is common, so is depression - another major motivation-killer in diabetes. One recent study at Johns Hopkins University found diabetics were 54 percent more likely to develop symptoms of depression. The researchers speculated that depression might raise the risk of behaviors that trigger diabetes or make it worse - overeating, lying around or smoking.

Food habits and exercise are among the hardest habits to change. Many diabetics sit through classes that encourage them to study food labels and understand proteins and fats and carbohydrates, and carefully measure portion sizes. It's not unusual, acknowledged Albright, who began her career as a dietician, to see eyes glaze over.

"Food can be confusing to people," Albright said. "Things require skill and patience, and you have to build on what people can do. Otherwise, they get overwhelmed and throw up their hands and say forget it."

What can be done?

With no quick fix and a burgeoning health crisis, it's becoming clear to doctors, policymakers and others that the system is broken when it comes to diabetes and other chronic diseases.

"We write off patients when they've had interventions that we know don't work," said Dr. Ed Wagner, director of the MacColl Institute for Healthcare Innovation at the Group Health Cooperative of Puget Sound in Seattle.

"We give them information - if you don't lose 30 pounds, you're going to die. We may throw a few diet sheets at them. Then they go home, and they come back and they weigh exactly the same, and we write them off. That would be like taking a child with strep throat and giving them aspirin instead of penicillin. They come back and they're not better and you blame it on them."

Wagner is the architect of what's known as the Chronic Care Model, which calls for some sweeping changes in the way doctors' practices are organized. It begins with the principle that the patient's job isn't just to obey medical orders, but rather to set informed goals and take responsibility for his or her own care.

To assist them, doctors need some way to track the progress of those patients individually and as a group - whether it's with an electronic medical record or something short of that. They should follow evidence-based guidelines. And perhaps most critical is giving more patient-care responsibility to members of their staff, and to others outside it.

With a little training, nurses, techs and office staff can be trained to take on pieces of the problem, following up with patients on a regular basis, listening to their concerns and offering advice along with a little handholding.

"There needs to be better use of the existing health care team," the CDC's Albright said. "It doesn't diminish the role of the physician, but it's trying to play to our strengths. You've got pharmacists and dieticians and nurses and psychologists. They're trained in counseling, they're trained in patient education."

Doctors, however, point out that insurers barely pay for office visits, much less those other services. The system of physician reimbursement is heavily weighted toward tests and procedures aimed at the quick diagnosis and cure, not a chronic disease such as diabetes. And money for preventive care and education is almost nonexistent.

Health reform proposals from both presidential candidates John McCain and Barack Obama would direct more money toward chronic disease management and prevention.

But despite the lack of money, some overworked family doctors are finding creative ways to help their diabetic patients over the long haul.

"They're really trying to adapt," said Dr. Michael Parchman, professor of family and community medicine at the health science center. "One clinic set up a plan where on one Friday morning each month they invited 12 or 15 of their patients with diabetes who were having trouble to come in as a group.

"This was a private, solo family practitioner here in town. I said, 'Why are you doing this?' He said, 'It's because I'm tired of pulling my hair out over these people.'"

Triple negative

Last year, National Association of County and City Health Officials reported that San Antonio had the second-highest death rate from diabetes of any major city in the country.

Almost no one was surprised. In the early 1980s, the landmark San Antonio Heart Study showed Mexican Americans not only have a much higher risk of developing diabetes, but they also seem to get a more aggressive form of the disease at a younger age.

Doctors here described it as an epidemic far earlier than in most other places.

"I have started to talk about the triple negative in the Latino communities," Ramirez said. "Our people have lower income, lower education levels and are less likely to have health insurance. All this leads to less access to health care. So already they are working at a disadvantage."

And while there's been some general success against diabetes - with some evidence of fewer major complications and a decline in long-term blood sugar control- that progress hasn't been universal.

A review by CDC researchers published in January found that between 1999 and 2004, long-term control of blood sugar measured with a blood test called hemoglobin A1c improved in all groups of diabetics - except Mexican Americans.

In a strict sense, few people die from diabetes. Instead, they die from the complications of diabetes - about two-thirds from heart attacks and strokes, the rest from kidney failure, liver disease, gangrenous limbs and infections that take advantage of a weakened immune system.

Officially, diabetes was the fifth-leading cause of death here last year, but that's deceptive. Of the 10,095 Bexar County residents who died, 1,414 of them had diabetes listed on their death certificates as a direct or contributing cause.

But too, that almost certainly understates the impact. Studies have shown fewer than 40 percent of diabetics have the disease listed anywhere on their death certificates, and only 10 percent to 15 percent list it as the primary cause.

Type 2 diabetes, which represents 90 percent to 95 percent of cases, is blamed on a toxic mix of heredity, obesity and inactivity. Type 2 diabetics can't properly use the insulin made by the pancreas to regulate blood sugar.

But only recently have doctors begun to understand how many things go wrong in diabetes, and why it's so frustrating to treat.

Eight separate defects are scattered throughout the bodies of diabetics, said Dr. Ralph DeFronzo, chief of the diabetes division at the health science center - who described them as "the ominous octet" in a keynote speech in June at the American Diabetes Association annual meeting.

Twenty years ago, DeFronzo said, scientists knew of three - insulin-producing beta cells in the pancreas that grow weaker over time, insulin-resistant muscle that causes high blood sugar after a meal, and a liver that overproduces glucose even during fasting. "Now we understand why diabetes is so hard to treat," said DeFronzo, who has proposed a far more aggressive drug regimen than is currently recommended, and feels that many prediabetics should be treated as well.

Tracking the problem

Long frustrated by the size of the problem here, local health officials sought and won permission to become the second city in the nation behind New York to create a diabetes registry.

The program, approved by the Texas Legislature last year, requires laboratories to report the results of A1c tests, which measure blood sugar control over three months.

The idea is that if pockets of out-of-control blood sugars can be identified, perhaps some patterns can be found and addressed. New York's registry goes a step further than San Antonio's, with health officials there mailing nag letters to both patients and their doctors when blood sugars are too high.

But when they received their first batch of raw data from the labs in recent weeks, city health officials were surprised. Overall A1c levels seemed to be much lower than they expected throughout Bexar County, given the scope of the problem here. A more complete quarterly report will be available within a few weeks.

"How do you reconcile that with the high rates of diabetes we see, the high rates of complications due to diabetes, whether it's death or amputation, blindness and certainly end-stage renal disease?" said Dr. Bryan Alsip, assistant director of the Metropolitan Health District. "Is it because those people who get the most severe outcomes aren't followed?"

Another possibility, Alsip said, is that doctors may be inappropriately using the A1c test to screen people for diabetes, rather than to monitor the success of diabetes treatment. If that proves true, it could make it harder to get a true picture of the disease in San Antonio with so many nondiabetics in the mix.

But whatever that picture proves to be, it will come down to the patient - and that patient's influences - as to whether the picture improves.

"There is a big responsibility when you have diabetes," Albright said. "This is not an easy disease to live with, but the alternatives are so much worse. Sometimes you go out in one fell swoop, but most often in diabetes you die one part at a time."

Three stories on the challenges of managing diabetes appearing this week in the San Antonio Express-News were reported with the assistance of the USC Annenberg/California Endowment Health Journalism Fellowships, administered by the USC Annenberg School for Communication and Journalism. The Express-News and KWEX-TV were selected by the program this year to report on diabetes and obesity, with a particular focus on the impact on Hispanic communities.