The insidious disease causes few symptoms until the organs are severely damaged and dialysis has become necessary for survival. Yet end-stage kidney failure would be largely preventable if its victims knew they were sick sooner.
Now a federal program is trying to get people most at risk checked in time to help: those with diabetes, high blood pressure or a relative with kidney problems. First targeted are black Americans, who are four times more likely than others to suffer kidney failure.
"People at risk ought to know it and ask their doctors for the test," says Dr. Thomas Hostetter, director of the new National Kidney Disease Education Program. "There's something you can do about it."
The premise of the new program, run by the National Institutes of Health, is that it will take demands for care from educated consumers to stem a 20-year rise in kidney failure. Despite screening guidelines, only 10 percent of Medicare patients get simple, inexpensive urine tests for kidney disease every year, Hostetter says. Once patients are diagnosed with kidney disease, fewer than a third are prescribed pills proven to protect their damaged organs from getting worse.
It's hard to know to seek a test. Just ask Cynthia Allison, 49, of Lithonia, Ga. A chance blood-pressure check found such extraordinarily high readings that doctors examined her kidneys, too. They found severe damage and ordered emergency dialysis, telling Allison she'd be dead in six months without it.
"I kept telling them they'd made a mistake," said Allison, a day-care owner who felt well and kept insisting her kidneys couldn't be failing since she could urinate, a common misconception.
She'd had poorly controlled high blood pressure for two decades, and now recalls that a doctor early on mentioned protein in her urine but didn't explain that was a sign of kidney disease.
"I never knew that you could lose your organs by having high blood pressure," she said. "No one ever told me."
The NIH program aims to change that. Pilot projects in four cities - Atlanta, Baltimore, Cleveland and Jackson, Miss. - urge black Americans with hypertension, diabetes or a relative with kidney problems to be tested. Program workers preach kidney disease in churches and distribute fliers at sporting events. Inner-city hospitals sponsor screening days where volunteers like Allison tell their cautionary tales to anyone visiting the hospitalized.
Next spring, NIH plans to begin expanding the program to other cities and additional groups, as anyone with hypertension or diabetes is at risk regardless of race.
Chronic kidney disease causes the organs to slowly lose their ability to filter waste out of the bloodstream. Many of the 20 million people estimated to have kidney disease don't know it. End-stage kidney failure is rising fast: 400,000 require dialysis or a transplant to stay alive, a number expected to double in the next decade, as it has in each of the last two.
To prevent kidney failure, patients first must know they're sick. Simplest is a $25 test to detect protein in urine on the spot. Doctors also can order blood tests, but results take longer and are difficult to interpret; NIH is researching an easier-to-read version in hopes of detecting more kidney disease during routine blood work.
Once diagnosed, several blood pressure drugs can significantly slow organ damage. Top of the list are pills called "angiotensin II receptor blockers" that relax delicate blood vessels in the kidneys; a major study of black kidney patients last year proved related drugs called ACE inhibitors do the same thing.
Keeping blood pressure and diabetes under tight control are crucial, too.
"It's important that people know that they don't have to die with this, they don't have to lose their kidneys," says Allison. Five years after her accidental diagnosis, she requires at-home dialysis while sleeping each night but still feels well. "It won't hurt to get checked out."
By Lauran Neergaard