Kidney disease takes a growing toll

By DAVID TULLER
Published: November 17, 2008

A SURPRISE: Rita Miller learned in 2005 that she had chronic kidney disease.

In February 2005, Rita Miller, a party organizer in Chesapeake, Va., felt exhausted from what she thought was the flu. She was stunned to learn that persistent high blood pressure had caused such severe kidney damage that her body could no longer filter waste products from her blood.

“The doctor walked over to my bed and said, ‘You have kidney failure — your kidneys are like dried-up peas,’ ” recalled Ms. Miller, now 65, who had not been to a doctor or had her blood pressure checked for years.

“The doctor said, ‘Get your family here right away,’ ” she said. “They were telling me I might not make it. I was in shock. I started dialysis the next day.”

Ms. Miller, who has since moved to Connecticut to be with her children, was one of the millions of Americans unaware that they are suffering from chronic kidney disease, which is caused in most cases by uncontrolled hypertension (as in her case) or diabetes, and is often asymptomatic until its later stages. The number of people with the disease — often abbreviated C.K.D. — has been rising at a significant pace, thanks in large part to increased obesity and the aging of the population.

An analysis of federal health data published last November in The Journal of the American Medical Association found that 13 percent of American adults — about 26 million people — have chronic kidney disease, up from 10 percent, or about 20 million people, a decade earlier.

“We’ve had a marked increase in chronic kidney disease in the last 10 years, and that continues with the baby boomers coming into retirement age,” said Dr. Frederick J. Kaskel, director of pediatric nephrology at the Children’s Hospital at Montefiore in the Bronx. “The burden on the health care system is enormous, and it’s going to get worse.

“We won’t have enough units to dialyze these patients.”

Concerned about the emerging picture, federal health officials have started pilot programs to bolster public awareness, increase epidemiologic surveillance and expand efforts to screen those most at risk — people with high blood pressure, diabetes or a family history of kidney disease.

Those people, and those who already have the disease, can often be helped by the same kinds of medicine and lifestyle changes used in hypertension and diabetes. They are urged to quit smoking, lose weight, exercise regularly, restrict their diets and, if necessary, control their blood pressure and diabetes with medication. But such efforts cannot restore kidney function that has been lost.

The trouble is that most people know very little about chronic kidney disease and rarely ask their doctors about kidney function. And many of those who have it feel relatively well until late in the illness, although they may experience nonspecific symptoms like muscle cramps, loss of energy and poor concentration.

“When most people think of kidney disease, they think of dialysis or transplantation,” said Dr. Joseph A. Vassalotti, chief medical officer for the National Kidney Foundation, a major education and advocacy group. “They don’t understand that it encompasses a spectrum, and that the majority of patients are unaware they have the condition.”

Chronic kidney disease progresses over the course of years, with its phases determined according to two criteria: the presence of protein in the urine, known as proteinuria, and how effectively the kidneys are processing waste products.

Patients get dialysis or a kidney transplant only when they are in the final stage of the disease, also known as kidney failure or end-stage renal disease. But the path to kidney failure can take years. “Only a tiny percentage of patients with kidney disease need dialysis,” said Dr. Stephen Fadem, a Houston nephrologist and vice president of the American Association of Kidney Patients.

Chronic kidney disease itself can damage the cardiovascular system and lead to other serious medical conditions, like anemia, vitamin D deficiencies and bone disorders. Patients are far more likely to die from heart disease than to suffer kidney failure.

Because African-Americans, Latinos and other minority communities suffer disproportionately from hypertension and diabetes, they experience higher rates of kidney disease and kidney failure. Other cases are caused by genetic disorders, autoimmune ailments like systemic lupus erythematosis, prolonged use of certain medications like anti-inflammatory drugs, and a kidney inflammation called glomerulonephritis.

In 2005, more than 485,000 people were living on dialysis or with a transplant, at a total cost of $32 billion. Medicare pays for much of that, because it provides coverage for patients needing dialysis or transplant even if they are not yet 65. In fact, kidney disease and kidney failure account for more than a quarter of Medicare’s annual expenditures.

The National Kidney Foundation, with an annual budget of $85 million, plays a major role in education, policy, research and treatment. The organization provides free screening for adults at risk for kidney disease, publishes a leading journal in the field, lobbies on treatment and policy issues, and conducts extensive public education and outreach.

But it has come under criticism on several fronts, in particular its close financial ties to the pharmaceutical industry. The agency greatly influences clinical care through the development of guidelines to advise doctors on various aspects of the illness. Critics say the guidelines have benefited drug makers, who are major contributors to the foundation.

“These practice guidelines are widely disseminated and heavily influenced by industry, and they come down on the side of recommending higher levels of treatment,” said Dr. Richard Amerling, director of outpatient dialysis at Beth Israel Medical Center in New York.

In 2006, the organization published new guidelines for treating anemia associated with chronic kidney disease. The guidelines were underwritten with support from Amgen, which markets a drug for anemia, and some members of the panel that developed the guidelines had financial ties to the industry.

The kidney foundation guidelines called for raising red blood cell counts to levels higher than those recommended by the Food and Drug Administration, and many nephrologists criticized the guidelines as biased in favor of industry. After new clinical trials suggested that more aggressive treatment could cause an increase in deaths and heart problems, the foundation revised the guidelines.

Ellie Schlam, a spokeswoman for the foundation, said the organization was vigilant “to ensure that no sponsorship funds contributed to the N.K.F.” would influence the content of any guidelines.

The organization has also been criticized by advocates who support financial compensation for organ donors, which the foundation firmly opposes as unethical and unlikely to increase the availability of organs. (In contrast, the American Association of Kidney Patients supports research into how financial incentives would affect organ donation.)

Even the foundation’s classification of chronic kidney disease into five distinct stages, a framework that has been widely accepted, has come under some challenge.

In 2002, the organization published clinical criteria for determining each stage of the disease. But some experts say those guidelines have the effect of overstating the problem by classifying many elderly patients as having the disease when they actually have standard age-related kidney decline. The foundation replies that a reduced kidney function among the elderly should not be accepted as normal just because it is common.

Because of Medicare’s role in paying for dialysis and transplantation, the federal government knows far more about the epidemiology and costs of end-stage renal disease than about chronic kidney disease over all. In recent years, Congress has directed the Centers for Disease Control and Prevention to fill some of these knowledge gaps.

In particular, the centers are seeking to develop a comprehensive surveillance system for the disease, organizing pilot screening projects for people at high risk in California, Florida, Minnesota and New York. The agency is also studying the financial implications of the disease and the cost-effectiveness of various interventions.

The National Kidney Foundation, which has worked closely with the C.D.C. and the National Institutes of Health on initiatives related to chronic kidney disease, has also focused on education and screening, particularly in minority communities. Terri Smith, the urban outreach director at the foundation’s Connecticut affiliate, says she spends a lot of her time going to black churches and community centers to talk about kidney disease, and has been surprised that so few people know anything about it.

“They’re very aware of hypertension and diabetes, but it was a revelation to me that people didn’t get the connection to kidney disease,” she said. “People have no idea they should eat less than a teaspoon of salt a day. I teach them how to read labels; I give them questions they should be asking the doctor.”

In Michigan, the local N.K.F. affiliate reaches out to hair stylists and other salon workers in minority communities, training them in talking to their clients about getting screened. Several years ago, after Mary Hawkins, 61, a nurse who lives in Grand Rapids, received a warning about kidney disease from a masseuse at her local salon, she made an appointment to see her doctor.

Although she did not have kidney disease, she learned that her blood pressure was high. Now she takes three medications to keep it under control, exercises three times a week, takes tai chi classes, no longer smokes and attends a dance class at the same salon.

“I knew kidney disease existed, but I wasn’t in tune with the risk,” she said. “You get so caught up in your own life that the last thing you think about is your health — even though it should be the first thing.”