A disparate burden

Genes, culture and the challenge of prevention

Mary Beth Gardiner
Published: July, 2003

Ron Reid (foreground), a former diabetes educator who also has type 1 diabetes, poses in front of the Matthew Walker Comprehensive Health Center in Nashville, Tenn., with Project REACH co-workers in this 2003 photo. From left behind stair rail are Tarese Gardner, Atha Jackson, Linda McClellan (project director) and Dayo Bailey. Seated on stairs are Tunu Kinebrew, Stephanie Hill, Bola Teyinka, Consuela Greene and William Owens (a patient in the program). Standing on stairs are Dorlisa Smikes and Deborah Carpenter.
Photo by Dean Dixon
When 19-year-old Ron Reid carried himself to the doctor’s office he knew something was seriously wrong. It took his falling into a hyperglycemia-induced coma, however, before the problem was nailed as diabetes.

The week or two before that day, Reid had been feeling pretty bad. Normally active and athletic, he was dragging, his glands swollen and his vision blurred. He battled cottonmouth, awaking each morning with a thickly coated tongue. An unusual craving for Butterfinger candy bars had him baffled. “I had never had a taste for sweets, even as a kid,” he says.

Scared and fearing the worst—it was the early ‘90s and AIDS was escalating—he finally headed to a clinic. As the staff plied him with juice, chocolate milk, and soda pop to quench his bottomless thirst, he made trip after trip to the restroom, what seemed to Reid “every three seconds.” When he began vomiting, the fruity alcoholic odor raised suspicious eyebrows. “They thought I was drunk,” Reid laughs. As they continued trying to make him comfortable, Reid lapsed into a coma. Finally, they checked his blood glucose level. It measured a whopping 1,244 milligrams per deciliter of blood, over 10 times the normal value.

Now in his 30s, Reid is a consultant to the Matthew Walker Comprehensive Health Center in Nashville, Tenn. The former diabetes educator remains committed to helping others in his community who are disproportionately at risk, not only for developing diabetes but also for the long-term complications that come with advanced disease.

This disparity isn’t limited to African Americans. That population is joined by other racial and ethnic minority groups, including Hispanics, Native Americans, Asians and Pacific Islanders, in experiencing some of the highest incidences of diabetes and its complications, particularly type 2 diabetes. Though there is little doubt that genetics plays a part in this inequity, there is mounting evidence that lifestyle, cultural factors, and access to healthcare also strongly contribute to what is now a growing tsunami of new cases.

Reid has type 1 diabetes, which has an abrupt onset of characteristic symptoms, frequent urination and terrific thirst being two of them. It typically develops at a younger age and results from destruction of the insulin-secreting cells of the pancreas. Insulin, a hormone key to converting food into energy, must be injected to restore normal function.

Making the case

Type 2 diabetes differs in that it usually develops later in life and results from, essentially, an overworked pancreas. Insulin resistance in predisposed individuals causes the pancreas to pump out larger and larger amounts of the hormone each time food is eaten. Eventually, the insulin-secreting cells die a premature death, forcing the need for insulin injections.

Diabetes currently affects 20 million Americans, with about 90 percent of cases being type 2. An estimated one-third are unaware they have the disease. Since World War II, type 2 diabetes has mushroomed in this country, becoming one of the costliest and most devastating diseases in recent history.

While Caucasians suffer from the disease in high numbers, the disease is fiercest in its attack on those whose ancestors came from places other than Europe.

African Americans are at especially high risk for diabetes. The rate of type 2 diabetes in that population is 60 to 70 percent higher than that seen in Caucasian Americans, a tripling of the rate seen in 1963. Complications from diabetes are greater, too. African Americans suffer a two-fold higher rate of blindness and lower limb amputation, and a three- to five-fold higher rate of end stage kidney disease.

Hispanic Americans, the second largest and fastest growing minority group in the United States, are twice as likely as non-Hispanic whites to develop type 2 diabetes and, like African Americans, Hispanics also see higher rates of long-term complications.

Native Americans are the population in this country most disproportionately affected by diabetes, especially type 2 diabetes. The Pima Indians of the desert Southwest have one of the highest incidences known worldwide. The disease is so common—more than 50 percent of adults develop type 2 diabetes—that public restrooms on reservations are equipped with hazardous waste bins for safe disposal of insulin needles and lancets. Most Pimas grow up assuming it is their destiny.

The prevalence of type 2 diabetes is estimated to be about two to four times greater in Asians living in the U.S. than in those living in their native country, though that may be changing. Recent reports suggest a wave of obesity is sweeping through Asia as populations throng into burgeoning cities emulating the Western bent for fatty fast foods and urban conveniences.

Having become a diabetes expert out of necessity, Reid knows that the tighter he controls his blood sugar – through watching what he eats and keeping active, as well as through judicious insulin supplementation – the more likely it is he will avoid health complications down the road.
Photo by Anne Rayner
It is this modern Western lifestyle of too much food and too little exercise that many are concluding is behind the explosion of type 2 diabetes in this country. While genes may set us up for diabetes, it appears to be behavior that tips the scale.

And tipping the scales is literally what we’re doing, from all evidence. Obesity among adults has doubled since 1980, while overweight among adolescents has tripled, according to former U.S. Surgeon General David Satcher’s 2001 report Call to Action. Especially at peril are children, where obesity and type 2 diabetes—formerly known as “adult-onset”—are increasing hand-in-hand at an alarming pace, leaving them vulnerable for years to come.

So is it genetics or is it environment at the heart of the epidemic? And why are certain people at particular risk for what Dr. James R. Gavin III, former president of Morehouse School of Medicine in Atlanta, Ga., and past chair of the National Diabetes Education Program, calls “diabesity”?

One of the most enduring theories as to why so many humans are poorly suited for our modern lifestyle, is a notion first posed three decades ago by genetics pioneer Dr. James V. Neel, that of the so-called “thrifty genes.”

Neel proposed that certain genes allowed ancestral hunter-gatherers to store fat during times of feast to survive times of famine. Today, with our easy access to caloric abundance, those genes that were designed to protect us from starvation are now a major handicap.

The anatomy of change

Some experts say it is this heritable penchant for high-energy foods that makes diabetes so hard to beat. The current wisdom for diabetes prevention and control -- weight loss through sensible diet and moderate exercise—is good advice for anyone. Making those changes, however, can be difficult for many people.

Fast food is everywhere, it’s cheap, and it tastes good. And when money is tight, it’s hard to argue when a hungry family can be satisfied for just a few dollars.

But food can be more than mere sustenance. Holidays, reunions, weddings, funerals. Saturday picnics and Sunday dinners. Gatherings of family and friends often revolve around special meals, rich with tradition and steeped in cultural meaning.

“A meal is often a cultural event,” says Marilyn Skaff, Ph.D., associate adjunct professor of Family and Community Medicine at the University of California, San Francisco. “Within the Chinese American population, for instance, the family gathers and eats from one big pot, making it very difficult to measure amounts eaten and calories consumed.”

African Americans in her community also talk of how tough it is to stick to a diet when they go to family gatherings, she says. “Convincing people to change this part of their life is very difficult.”

“It is a tough, tough disease to live with,” says nurse practitioner Anne Brown. “I can’t think of any other disease where we ask people to do so much to take care of themselves.”

Brown sees referral patients in her endocrinology practice as part of the Diabetes Improvement Program, part of the Vanderbilt-Eskind Diabetes Clinic. The nurse practitioner-run program aims to help patients fine-tune their glucose control.

With the help of dietitians, the advanced care nurses intensively counsel patients over a three-month period, meeting weekly to adjust medication regimens and facilitate lifestyle changes. Once glycemic targets are achieved, patients return to the care of their primary physicians.

A similar program, conceived through an alliance between Nashville’s historically black Meharry Medical College and Vanderbilt, exists at local “safety net” clinics to ensure that every diabetic patient receives a recommended standard of care, which includes annual measurement of hemoglobin A1c, cholesterol, weight, and blood pressure, in addition to a kidney function test and eye and foot exams.

“There is no aspect of these patients’ lives that diabetes does not touch and that they don’t have to make adjustments for,” says Brown.

The demands of the disease can cause frustration and anxiety in patient and family, leading to marital strife and other stresses. Feelings of helplessness can overwhelm, and depression is common, especially at diagnosis and later, at the onset of long-term complications.

Addressing patient's perceptions of mastery and control of their diabetes affect their self-care and outcomes of the disease is the research focus of M. Kathleen Figaro, M.D., assistant professor of Medicine at Vanderbilt.

She is interested on how psychological states can be measured and how interventions can increase self-perception of mastery and can improve previous feelings of learned helplessness. “Empowered patients do better with diabetes management,” Figaro says.

Both physical and psychological variables can influence disease outcomes. Without sufficient knowledge, positive attitudes and active behaviors, patients may receive adequate care but still fail to experience the best outcomes. Perhaps this accounts for some of the racial disparities seen in diabetes outcomes, she says.

Raising awareness

Putting the brakes on escalating diabetes incidence in disadvantaged and minority populations will not be easy, but most agree that the greatest impact will come from education, both at a local community level and on a broader national scale.

“Certainly, community outreach and intervention is critical to the control of this problem,” says Satcher, who is now director of the Center of Excellence on Health Disparities at Morehouse School of Medicine. “There isn’t any substitute for it, really. It’s going to get more people into care early. It’s going to, in some cases, prevent onset in people who are at high risk. And when people get into care…it will help them stay in care.”

Community outreach has been the goal of the Nashville REACH 2010 project (Racial and Ethnic Approaches to Community Health), part of a national initiative aimed at eliminating health disparities in more than 30 urban and rural communities. The project’s target group: African-Americans in north Nashville who are particularly hard-hit by diabetes and heart disease when compared to Caucasians in the same area, and when compared to African Americans in other parts of the country.

During the past seven years, REACH volunteers have worked with hospitals, community groups and other providers, including the Matthew Walker Comprehensive Health Center, to screen for undiagnosed diabetes, hypertension and high cholesterol, increase access to quality health care, decrease tobacco use and teach the benefits of nutrition and physical activity.

Far too many Hispanics and African Americans don’t have a medical home, says Satcher. “A lot of them go to emergency rooms for their care,” he says, where cultural issues, such as language barriers or racial stereotyping, often make for a less than satisfactory experience.

Satcher points to a 2002 Institute of Medicine report on racial and ethnic bias in health care—Unequal Treatment—as “pivotal in increasing sensitivity” among providers, especially in its potential to affect training of future physicians and nurses. “There is, for example, a program here at Morehouse School of Medicine that attracts people from around the country to a course on cultural competence.”

Increased cultural sensitivity in providers is a major feature of the National Diabetes Education Program, according to Gavin. The NDEP has a special populations work group, he says, that is “heavily invested in looking at approaches to help bridge the cultural chasms that make it difficult for some of these cross-cultural encounters to be successful.”

As to raising consciousness about the disease within minority populations, Gavin believes that the success of diabetes education efforts will hinge on repetition of message, not just isolated, one-hit attempts.

“There has been this tendency to think that…as long as content is accurate and the message is compelling, it shouldn’t take much exposure to drive the point home,” he says. “I think consistency of message will be required, and that means often and it means early.”

Gavin advocates setting up educational programs in schools and in worksites, through public service announcements, and through working with healthcare-oriented cultural organizations—such as Indian Health Services, the National Council of La Raza, and the Association of Asian Pacific Community Health Organizations—to accomplish his goals.

“I hope that the national conversation on diabetes is one that will rise to the same level as the one we saw in the national conversation on cholesterol. Everyone knew it was important; everyone knew their number,” he says. “When we see penetration of that level of awareness among our at-risk and affected populations, then we’ll know that we’re really beginning to move the needle and gain some traction.”

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