Surviving Diabetes: More have diabetes knowledge, but not always will to deal with it

If there are advantages to kidney failure, Ruben Rodela can count a few. Having free time to take his four young kids to the dollar movie on summer weekdays, for example, or to browse the shelves at Las Palmas Library. He's also dropped 70 pounds.

For the most part, however, the 31-year-old diabetic has had little to smile about since his kidneys stopped working six months ago and he reorganized his life around the dialysis machine that filters his blood of toxins three times a week.

“When you're there for four hours, a lot of things can go wrong. You cramp, you get dizzy, you get headaches, you can have a heart attack. If you drink too much fluid, you'll cramp. My God, you feel like dying when you're cramping. There are grown men who are actually crying, it hurts so bad.”

That admission comes at the end of a long, matter-of-fact conversation that has been until now mostly free of complaint. Diabetes is a family burden, for whatever reason. Rodela was diagnosed at age 10. His mother died of diabetes complications four years ago, at 49. His younger brother, grandparents and countless aunts and uncles — all are Type 2 diabetics.

Now his two sons, 8-year-old John Carlos and 9-year-old Ruben Jr., show some of the telltale signs — the dark coloring of the fold at the back of the neck, or acanthosis nigricans.

“It's scary, particularly for my kids,” he said. “It could be preventable, but it takes a lot of discipline and knowing. Part of it was, when I was younger we didn't know better.”

People may know better about diabetes than they used to, but whether they're putting that knowledge to consistent good use is another question. Last year, the National Association of County and City Health Officials reported that San Antonio had the second-highest death rate from diabetes of any major city.

Bexar County's rate of end-stage renal disease, one of the grim complications of diabetes, appears to be twice that of the rest of the country. University Health System, the tax-supported safety net for the uninsured here, will open its fourth dialysis clinic within a few months.

And so, researchers — including some in San Antonio — have been studying why diabetics fail to do all the many things they should to avoid premature death and disability. More importantly, some are asking how to better support and motivate them, often for decades, so they will.

On their own

Sixty years ago, Dr. Elliott Joslin — then the most famous diabetes doctor in the world — began handing out medals to his patients who survived beyond the predictions of insurance actuaries.

They deserved the credit, Joslin believed. Physicians could teach them, prescribe them insulin and monitor their progress. But successful management of diabetes was almost entirely in their own hands.

They had to weigh their food, test their urine for sugar, inject themselves with insulin after boiling and sharpening their needles, and exercise. It took discipline, hard work, courage and cheerfulness. Conversely, Joslin wrote, patients who did poorly generally had themselves to blame.

Since then, the burden on patients hasn't gotten any lighter, or less complex. But experts have a better sense of why some people fail to manage their disease.

One San Antonio study a decade ago found that while patients were concerned about their disease and made some attempt to manage it, none followed doctors' advice to the letter. Four reasons emerged.

About half thought that the pills or insulin they took meant they didn't have to give up unhealthy foods. Eighty percent couldn't accept the idea of being different, having to eat “rabbit food” while the rest of the world did not. Sixty-three percent made health decisions based mainly on their physical symptoms. The researchers noted that high blood sugar doesn't feel bad, while low blood sugar, sometimes a complication of treatment, feels awful.

And finally, 74 percent struggled to pay for treatment — even the sliding-scale cost of public clinics — along with the considerable expense of buying supplies and eating fresh fruits and vegetables.

Ann Albright, director of diabetes translation at the Centers for Disease Control and Prevention, recalls that when she worked as a dietitian in a public clinic early in her career, “people really had pretty chaotic lives. Food was oftentimes the way in which they rewarded themselves, or comforted themselves, or celebrated or had some shred of enjoyment in life.

“So your goal is not to say, ‘Sorry we're going to take all that away from you.' Your goal is to try to work through these things with people. And that does take time.”

Lack of urgency

At the beginning of their illness, people with Type 2 diabetes — which makes up 90 percent to 95 percent of cases — often lack a sense of urgency about taking proper care of themselves. That's because for many years they may know they're sick but don't feel painful symptoms.

An astonishing study presented at this summer's American Diabetes Association meeting found that between 9 percent and 24 percent of newly diagnosed diabetics with health insurance failed to fill their prescription for a glucose-lowering drug for at least a year, depending on the drug.

But it may be that early treatment that makes a great deal of difference. New findings published this month from the United Kingdom Prospective Diabetes Study, a landmark trial, found that Type 2 patients who aggressively lowered their blood sugar with drugs during the first 10 years after diagnosis maintained a much lower risk of death and complications a decade or more after that — even among those who couldn't or didn't maintain low blood sugar levels after a few years.

Doctors are even pushing treatment before diabetes officially begins. A consensus statement by two endocrinology groups, released in July, calls for doctors to prescribe first lifestyle changes and even medication in some cases for prediabetics — those whose blood sugars are higher than normal but who are not yet considered full-blown diabetics.

Even though Type 2 diabetes used to be called non-insulin-dependent, at some point insulin injections can do a good job of controlling blood sugar after oral medications have stopped working. But many Type 2 patients are reluctant to begin insulin injections. Earlier findings from the United Kingdom study found that 27 percent of patients prescribed insulin refused to take it.

A survey of San Antonio patients a decade ago found that they had complicated feelings about insulin. Some felt having to take it meant that they hadn't done a good job caring for themselves or indicated they were on a downward slope. Some even associated complications such as blindness to the shots rather than to the disease.

And as the disease progresses, so do the number of medications and supplies. Even patients with health coverage can find the costs exorbitant. The uninsured can find them impossible.

“Sometimes they live on samples,” said Dr. Robert Trevino, a researcher who maintains a primary care practice on the South Side. “Some months I tell them, ‘You have to take these.' And it's, ‘No, I can't afford them.'”

“They're always worried,” said Sara Smolens, a social worker at the Texas Diabetes Institute. “We go to renal clinic, which is pre-dialysis, and everybody is just very worried about how they're going to make their house payments. They can't work anymore, they can't see (because of retinopathy). I just had a guy who is trying to work for Burger King. He said, ‘I can't see the (order) board.'”

Smolens and her fellow social worker, Blanca Mares, spend the better part of most days qualifying their patients for benefits — “food stamps, medications, utility assistance, anything that would help them manage their lives.” Most are too sick to navigate the system.

Providing support

In his 1999 book “Diabetes Burnout,” psychologist William Polonsky writes about the kinds of feelings that smother motivation. Some diabetics are overwhelmed and feel out of control. Others feel helpless that their condition will improve. Some feel alone. Others deny the seriousness of their illness.

“People with diabetes have to get to know themselves and have to be willing to think about where their challenges are and where they struggle most, and start chipping away at those,” the CDC's Albright said.

Estimates of depression among diabetics range from 10 percent to 30 percent. Research shows that not only is depression more common in diabetics, the reverse is also true — those who suffer first from depression are more likely to develop diabetes.

Polls have shown that diabetics wish they had more support. And while few support groups exist for diabetes — especially compared with many less-prevalent diseases — churches often are an outlet, especially in neighborhoods in which rates are high.

At El Divino Salvador United Methodist Church on the West Side, which has a sizable proportion of diabetic members, a nurse from Wesley Nurse Health Ministries offers regular health advice and screening, while parishioners pray for each other's health, said the Rev. Jose L. Palos, the church's pastor.

Some turn to online diabetes communities such as tudiabetes.com and www.diabetesdaily.com to vent or offer encouragement or share information.

While acknowledging that family support can range from inadequate to overbearing, Polonsky argues that patients who have it fare better — providing a sounding board and encouragement.