Diabetes treatments lag for minorities, health officials note

Studies imply nonwhites face suboptimal advice despite heightened risks


ROCKVILLE - Otis Brawley tells the story with no rancor, no anger, but with more than a bit of sadness. It is a story of his mother.

Brawley heads the federal Office of Special Populations Research for the National Cancer Institute here, essentially in charge of finding out why there is a gap in cancer care for minorities and other groups and how to change that.

It is a warm spring day when he tells the story. But when it is over, there is a chill in the air.

His mother has diabetes; she has had it for a long time.

"My mother's blood sugars were allowed to run high for 25 years," he begins.

"The doctor thought he was trying to keep from inconveniencing her. He thought it was a way to keep her compliant. Run her a little high, give her a little laxity."

What he did was allow her to give herself but one injection of insulin a day, even as evidence began to accumulate convincingly in the 1970s that two injections a day were preferable, and even as more were recommended by the 1980s.

"You see, for him he had this black woman for a patient and he felt if you run them too tight and too rigorous, she will just be lost to follow-up altogether," he explained. "So he paternalistically did not explain to her what he was doing. He just decided to run her sugars a little higher."

So what happened?

"My mother is a bilateral amputee now. She lost both legs below the knee."

It is an oft-repeated story in this country. Of the estimated 120,000 people who have amputations each year because of complications of diabetes or peripheral vascular disease of the legs, a disproportionate number of them are African-Americans, Hispanics and American Indians.

A 1996 published study in the journal Diabetes Care found that the rate of diabetes-related amputations for blacks was 64 percent higher than the rate for whites.

Among Pima Indians, who have the highest rate of diabetes of any group in America, the amputation rates were 370 percent higher than whites.

That same study also found that the in-hospital death rate related to an amputation was twice as high for blacks as for whites.

The reason many researchers give for this huge discrepancy include higher rates of diabetes and peripheral vascular disease among these groups; lack of regular health care; lack of preventive care; and the fact that care was received at hospitals or institutions with less technological expertise than those visited by whites.

But Brawley and others believe there are more insidious factors at play here.

For one thing, research done by Boston researchers concluded "a difference in severity of disease between African-American and white patients is not likely to explain fully" these differences in amputation rates. Their research matched patients by severity of disease and related risk factors, and still blacks underwent more amputations.

And it was considered unlikely that patients preferred amputation to medical therapy because of horrendous quality-of-life sacrifices that occur after amputation. Only 75 percent of below-the-knee amputees and 40 percent of above-knee amputees resume normal walking with appropriate rehabilitation and artificial limbs.

What may likely be more at play here is a sense among physicians that nonwhite patients may be less compliant with the rather rigorous care it takes to save a limb from amputation. Such a regimen typically includes daily multiple medications, wound-dressing changes and immaculate hygiene. Thus, the reasoning goes, it is easier and more convenient to just lop off a leg or foot or toe.

"There was a great deal of care that was suboptimal [for Brawley's mother] and I am convinced it was because the doc thought he was being nice to her," Brawley said.

Reed V. Tuckson, an African-American physician who until last year was senior vice president for professional affairs for the American Medical Association, said, "Decisions are being made to lop off an extremity because of concern for compliance."

But what may be even more devastating is the lack of resources to prevent the problems leading to amputation in the first place, Tuckson said.

"I will tell you there are a lot of people who really are not getting the help they need to properly manage chronic conditions, and one of my frustrations is there seems to be no one assigned in the medical care system to attend to that agenda," he said.

As for Brawley's mother, now 78, she has been able to remain living independently. But now she is on a multiple daily insulin injection program.

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