In one reference to Trina Frazier of the American Kidney Fund, an Aug. 23 Health article referred to the organization as the National Kidney Fund. (Published 8/25/2005)
Kidney disease in America has a ground zero, and it is located right here in Washington. Three District Zip codes -- 20002, 20011 and 20019 -- have the highest rates of end-stage kidney disease in the nation. Yet many people headed toward kidney failure have no idea there is anything wrong with them.
Kidney disease is a national epidemic, affecting about 20 million Americans, or one out of nine adults, according to the 2000 annual report of the U.S. Renal Data System (USRDS). This is double the number of a decade ago. Eight million of the 20 million have seriously reduced kidney function. Nearly 400,000 have practically no function and require a punishing regimen of dialysis or a kidney transplant to stay alive, according to the National Kidney Foundation of the National Capital Area.
The District's rates are practically off the chart. Inside the 20019 Zip code, in the easternmost part of the city, the age-adjusted rate for new cases of end-stage kidney disease -- 1,369 cases per 100,000 population -- is 44 times the national average. The 20011 and 20002 areas, in the city's north and northeast, lag only slightly behind that. These numbers come from the Zip Code Analysis Project, a program run by the National Minority Health Month Foundation (NMHMF), a group that uses scientific data to address racial and ethnic health disparities.
While the Zip code analysis has not yet been published in a peer-reviewed journal, data published by the Centers for Disease Control and Prevention, the USRDS and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) all point to the District as having the highest rate of kidney disease in the country. For example, the USRDS reports that the District's rate of total -- rather than new -- kidney failure cases was 3,640 per million in 2002. That surpassed the state with the highest rate, Louisiana (2,020), and far exceeded Maryland (1,822) and Virginia (1,597).
So where are the lapel ribbons and the walkathons? That's what NMHMF executive director Gary Puckerein wants to know. "Kidney disease seems to fly under the radar screen," he said, even though a 2002 USRDS report pegged the annual cost of treating kidney failure at more than $20 billion. "It just never seems to get the attention one would think it would get."
Race clearly enters into the District's kidney disease profile: African Americans, who are a majority of the District's population, are at two to four times the risk for kidney disease as are whites. More blacks than whites have diabetes or hypertension, the leading causes of kidney disease, notes David Rose, bureau chief for primary care in the District's health department.
But race alone doesn't explain the District's soaring numbers. Miami and Chicago, for example, have high concentrations of African Americans but nowhere near the District's rate of kidney disease.
So what else is at play in Washington?
That, says Puckrein, is "the million-dollar question."
It's not difficult to find suspects. Poorer access to health care, lack of insurance or other economic factors could contribute to the District's problem. Lifestyle factors -- especially poor diet and lack of exercise -- may also play a role. That's because obesity leads to diabetes, and diabetes, said Josef Coresh, professor of epidemiology, medicine and biostatistics at the Johns Hopkins Bloomberg School of Public Health, "is the fastest-growing cause of kidney disease." Aging is another possible factor -- kidneys, like other organs, weaken with age.
U.S. Census data for 20019, which includes the Marshall Heights, Capitol View and central Northeast neighborhoods, show some characteristics that might play a part. Some 28 percent of individuals in the almost exclusively black area are below the poverty level, more than twice the national percentage. Those 65 and older make up 13.5 percent of the population, as compared with 12.4 nationwide. In 20011, which includes Petworth and Manor Park, almost 17 percent of residents are elderly.
There are many sources of kidney disease: autoimmune diseases, extreme urinary tract infections, certain medications, some toxins (such as lead) and HIV, among others. The two leading causes, however, are diabetes and high blood pressure.
Damage to the kidneys triggers a chain reaction, including a buildup of toxins, severe anemia, out-of-control blood pressure, fragile bones and malnutrition. Once end-stage kidney disease occurs, the risk of death from cardiovascular disease spikes 10 to 20 times higher, according to many studies.
But even people being treated for diabetes and high blood pressure often do not know they are prime candidates for kidney trouble. Barbara Brown is a case in point.
Brown, a 62-year-old payroll technician in the city's health department, has a long history of uncontrolled hypertension and diabetes, and a family history rife with both conditions. A little over a year ago, she noticed that she was "retaining fluids" in her ankles.
A visit to her primary care doctor last year followed by a quick referral to a nephrologist revealed the problem: Her kidneys were failing. In February, Brown became one of the District's dialysis patients, who numbered more than 1,700 at the beginning of this year. She said she "had an inkling" she was at risk, since she'd had problems managing her blood pressure from the age of 16, but she'd never really given it a lot of thought.
"When you're young, you don't care that much," Brown said. By the time she got her blood pressure and sugar under control, "it was too late for my kidneys." Now she shuttles three days a week to a dialysis clinic in Northeast Washington, spending three to four hours per session hooked up to a machine the size of a small refrigerator, waiting for her blood to be run through a series of specialized filters.
"They say you live and you learn," said Brown. "I have learned. This is a harsh lesson, but I have learned it."
In Brown's case, as in many others, high blood pressure should have been a red flag for kidney disease. Diabetes is another. So is having a relative with kidney disease. And being African American, like Barbara Brown.
But most people don't know this. Said Trina Frazier, associate director of minority health programs for the American Kidney Fund: "A lot of times you hear, 'I have high blood pressure, it runs in my family.' Or the same thing with diabetes -- but not really making the connection that that means 'I'm at risk.' "
It is not uncommon for patients to find out their kidneys are failing only when they become so sick they have to be taken to the emergency room, say both Coresh and Kamaljit Sethi, a nephrologist with Washington Nephrology Associates.
In the early stages of kidney disease, people may experience symptoms that are, Coresh said, "much like hypertension, and much like earlier stages of diabetes, where you may not feel as good, you may have fatigue, but otherwise none of your symptoms are very specific." Lab testing, he said, is the only way to pin down the cause.
Doctors are missing the warning signs, too. A study in 2004 in the American Journal of Kidney Disease noted that "90 percent of participants with kidney disease had visited a doctor within the year before the survey, and of these participants, only about 36 percent knew they had kidney disease."
One reason doctors may miss the red flags: their reliance on measures of a substance called creatinine to indicate kidney function. Found in the bloodstream, creatinine is a waste product formed by normal breakdown of muscle cells. Normally, it is filtered from the blood by the kidneys, and then passes out in the urine. When kidneys malfunction, creatinine is not filtered effectively, and blood levels, measured in milligrams per deciliter, or mg/dL, rise.
But what constitutes a normal level of creatinine differs widely, depending on a person's age, sex, race, body mass and other factors. For example, a creatinine level of 1.5 in a 200-pound man may indicate healthy kidneys, while the same reading in a frail elderly woman may spell disease. But many doctors fail to differentiate, say experts and consider any score under 1.5 normal.
A more reliable tool, say experts, is the glomerual filtration rate, or GFR. This figure is obtained by subjecting the creatinine number to a series of calculations that make it a more individually tailored indicator of kidney function. (A GFR above 90 is considered normal.) The GFR has been shown to identify many cases of kidney disease that, if judged by creatinine level alone, would have gone undetected.
But, said Coresh, "having to factor in the patient's age and sex and race, and estimate the kidney function either in their head or put it into a calculator" is a task many doctors don't perform during often brief and hectic patient encounters. Public Education
Early detection can make a difference in kidney disease. For starters, it can avert situations where patients' kidneys are unknowingly harmed by medications prescribed for unrelated problems. For example, many antibiotics and most anti-inflammatory drugs can cause lasting damage for patients with reduced kidney function. Similarly, dyes used for some common diagnostic procedures can permanently hurt weak kidneys. Early diagnosis may also mean a lifesaving referral to a kidney specialist. Some studies show that patients who saw nephrologists late were 70 to 80 percent more likely to die of kidney disease. Time is also critical in making lifestyle changes, such as controlling blood sugar and blood pressure.
"That is why we try to step in" and offer screenings and education seminars, said Frazier of the National Kidney Fund. "There is something you can do, and even if you do have kidney disease you can definitely slow down the progression."
To help patients and doctors communicate, the National Kidney Foundation is advocating for wider use of GFR figures. Said Sethi: "If a physician tells a patient they have a kidney problem, [the patient] should ask, 'What is my kidney function number?' I encourage patients to remember it, much like they remember their cholesterol."
In the same way you'd tell a new doctor, "My cholesterol is 190," you'd now go in and say, "I have some kidney problems. My kidney number is 36." Slowly, the GFR is catching on, with some labs now calculating the GFR for doctors while reporting creatinine levels.
Assigning a GFR number "immediately puts [a patient's condition] on the physician's radar screen," said Coresh. "If you want to detect earlier kidney disease, it makes a pretty big difference."
Puckrein wants to bring that message especially to the hardest-hit regions, to places like Zip codes 20002, 20011 and 20019. "People are dying when they really don't have to, at very young ages," he said. "There's tremendous suffering and tremendous cost."
Ranit Mishori, a family practice resident at Georgetown University/Providence Hospital, last wrote for the Health section about a heart disease treatment called enhanced external counterpulsation.