Although kidney failure and its leading causes disproportionately affect African Americans, they are largely unaware of their high risk and of preventive measures, according to the first NIH study to assess the group's knowledge and awareness about kidney disease.

While 90 percent of African Americans surveyed by the National Kidney Disease Education Program (NKDEP) had heard about kidney disease, only 15 percent felt their personal risk for developing the disease was higher than average and fewer knew specifically how to prevent it. This gap in awareness raises serious concern, especially because 44 percent of them had at least one major risk factor for kidney disease — diabetes, high blood pressure or a blood relative with the disease. In addition, only 17 percent named kidney disease as a consequence of diabetes and only 8 percent named it as a consequence of hypertension. These two diseases are the leading causes of kidney failure in the United States and account for 70 percent of kidney failure among African Americans.

"We clearly need to work closely within our community to provide the facts about kidney disease," said Janice Lea, M.D., spokesperson for Atlanta's NKDEP coalition. "One step we are taking is asking dialysis patients to encourage relatives and friends who are at high risk to take the disease seriously and be tested while they can still do something about it."

The poll also found that 52 percent of people knew at least one major cause of kidney disease, but 48 percent were unable to name any cause and others named incorrect causes such as drinking sodas. When asked about symptoms of early kidney disease, 13 percent correctly said that there are none, while 64 percent expected early symptoms to include difficulty urinating, general pain and frequent urination.

"Kidney disease is a silent killer. People find themselves in the emergency room, on dialysis, before they even know they have a problem," said Dr. Lea. "That's why it is so important to control diabetes and high blood pressure and have your blood and urine regularly tested for kidney disease once you know you are at risk."

While anyone can develop kidney disease, African Americans are hit especially hard. An estimated 36 in 100,000 African Americans versus 11 in 100,000 Whites were treated for kidney failure in 2001. African Americans have four times the risk of kidney failure and those with diabetes have up to six times the risk compared to White counterparts. But the biggest disparity is among African American men ages 25 to 44, who are 20 times more likely to develop kidney failure compared to corresponding Whites.

Epidemic numbers of people — roughly 20 million — have kidney disease and another 400,000 or more are already on dialysis or have a kidney transplant because their kidneys failed. The cost to taxpayers, insurers, and patients was an estimated $22.8 billion in 2001 alone.

NKDEP polled more than 2,000 African Americans aged 30 and older living in Atlanta; Baltimore; Cleveland; and Jackson, Mississippi, in April 2003, shortly before local coalitions launched a year-long pilot program, "You Have the Power to Prevent Kidney Disease." The study will be repeated in May to measure changes in knowledge and awareness.

"Seeing an increased awareness in our pilot cities would be a good indication that the program is working," said Thomas H. Hostetter, M.D., a kidney specialist and national director of NKDEP. "What we learn will help us fine-tune the program, but we definitely plan to expand it nationally and to other people at high risk. We think all segments of the population, not only African Americans, are largely unaware of the risks."

NKDEP is sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health, U.S. Department of Health and Human Services. The goal of NKDEP is to prevent kidney failure. The program's 30 partners include both public agencies and private organizations.

Visit NKDEP on the web at www.nkdep.nih.gov.

Learn more about kidney disease at http://kidney.niddk.nih.gov/kudiseases/a-z.asp#K.