Many on debilitating dialysis not told about transplantation option
The failure of doctors at dialysis clinics to inform thousands of patients about kidney transplantation may be shortening lives and costing taxpayers millions of dollars a year, a Tribune-Review investigation found.
Kidney transplantation adds an average of 10 years to a patient's life, and a new kidney costs the federal Medicare program $50,000 less per patient than conventional dialysis.
Yet, thousands of patients started dialysis without hearing about transplant options. Some spend as long as five years on the debilitating treatments before they are placed on the nation's transplant wait list, while others who would benefit from the surgery are not even on the list.
Those spending a year or longer on dialysis before being listed for a transplant include privately insured patients whose treatments are more profitable to clinics. The country's largest dialysis providers say they need those patients to offset lower payments from Medicare.
Money plays a strong role when it comes to prescribing dialysis before transplantation, some experts say. Others point to ignorance, fear and insurance rules as reasons dialysis patients are not listed for transplantation.
"In the ideal world, were money not an issue and if everyone was honest, everyone would be referred for a transplant right away," said Dr. Bruce Kaplan, chief of nephrology and medical director of the Abdominal Transplant Program at the University of Arizona Medical Center.
Given the magnitude of the problem, many factors can contribute to the lack of transplant referrals, said Dr. Herwig-Ulf Meier-Kriesche, medical director of Renal Transplant at the University of Florida's Department of Medicine.
"Certainly, the data can't really tell you why all this is happening," he said. "We just know that a lot of patients who should be referred are not, but there might be good reasons for it."
The dominance of dialysis over other kidney disease treatments occurs at a time when lawmakers are engaged in a fierce debate over how to restrain soaring health care spending. Patients with chronic kidney disease and kidney failure account for one of every five Medicare dollars as the program careens toward insolvency. Government projections show overall health care spending, left unchecked, will chew up 40 percent or more of the nation's economy by 2050.
"Transplantation ought to be mandated because the outcomes are better, the quality of life is better and it's less expensive," said Dr. Tom Parker III, a Dallas-based nephrologist who co-chaired a summit on dialysis failures in spring at Harvard Medical School.
The Trib's four-month investigation found:
• More than 32,000 of the 105,653 people who started treatment for kidney failure in 2006 were not informed about the option of kidney transplantation, according to the latest available information reported to the Centers for Medicare & Medicaid Services.
Nearly 44 percent of the uninformed simply were not assessed for transplant, the data show. In other cases, patients were deemed to be medically or psychologically unfit for a transplant, or unsuitable because of age.
The Trib obtained the state-level statistics from the U.S. Renal Data System, a federal contractor that collects and analyzes dialysis information.
• Three out of four people listed for kidney transplants last year had started dialysis, according to the United Network for Organ Sharing, a national nonprofit that tracks transplant information.
Medical research shows transplantation should be the first choice of treatment for kidney failure, and people with chronic kidney disease can be listed for an organ before their kidneys fail. Half of those on dialysis received the treatment longer than 14 months before they were listed.
Two-thirds of patients who found a live donor started dialysis before surgery. More than half of them were on the treatments for longer than 18 months when they received organs.
• Only 16 percent of dialysis patients were listed for kidney transplants in 2006 -- far short of the federal goal to have 30 percent registered by 2010, according to the Medicare Payment Advisory Commission, a panel that advises Congress on Medicare spending.
The inspector general for the U.S. Department of Health and Human Services reported in 1987 that 10 percent to 11 percent of dialysis patients were registered on a transplant waiting list, saying that "low referral rates can add to Medicare costs."
"There's a lot of inertia in the system," said Dr. Paul Terasaki, a professor emeritus at UCLA School of Medicine, who testified to Congress about the issue in 1983. "The problem has existed a long time."
• The $65 billion-a-year dialysis industry needs to constantly find insured patients to offset losses from treating Medicare patients and to maintain profits, corporate filings state.
"The payments we receive from private payors both subsidize the losses we incur on services for Medicare and Medicaid patients and generate a substantial portion of the profits we report," says an excerpt from an end-of-the-year report filed by Fresenius Medical Care, the largest dialysis provider in the United States.
Medicare assumes payments for almost every patient on dialysis longer than 33 months, but providers say its reimbursements are not high enough to cover costs. Fresenius says its average cost per treatment in the United States is $289 but Medicare pays it around $250. The company provides 27 million treatments a year with 65 percent of its business coming from the United States.
"We have been aware of that fact that patients are not always told all of their options," said Dr. Barry Straube, Medicare's chief medical officer and director of its Office of Clinical Standards and Quality.
The agency created a rule last year requiring clinics to inform every patient about options -- including transplantation -- but no one specifically checks for compliance because that would "be far too expensive and costly," Straube said. State survey agencies might look at the transplant information rates when they inspect clinics every three years and when they receive a complaint, he said.
Not enough organs
Some doctors argue that even if everyone were listed for transplants, there are not enough organs. Nearly 56,000 people are waiting for kidney transplants, according to UNOS. Only about 16,000 get a transplant every year.
"We all would like to see all dialysis patients on a transplant list and ready to be transplanted," said Dr. Jerry McCauley, director of transplant nephrology at the University of Pittsburgh Medical Center. "The reality is that if we were to do anything close to that, we would simply extend the waiting time for those patients."
Others counter that early transplant referral would allow patients to consider seeking kidneys from live donors or to get on the waiting list for organs from deceased donors as soon as possible.
Officials at some of the largest dialysis companies in the country said they go to great lengths to inform patients about all treatment options, including transplantation.
Dr. Allen Nissenson, chief medical officer of DaVita, which operates about 1,500 clinics, said patients are given names of transplant surgeons and transplant centers within 90 days of starting dialysis.
"The idea that people would not be informed so we could make money, I completely reject that," Nissenson said.
Fresenius has a similar policy of initially assessing all patients and conducting follow-up examinations within three months, said Terry Morris, vice president of investor relations and corporate communications.
Michelle Shields, a nurse practitioner at Fresenius in Western Pennsylvania, said some of the company's clinics have educational programs to teach patients with chronic kidney disease how to manage symptoms such as high blood pressure before they start dialysis.
"If we take better care of our patients before they get on dialysis, they'll do better once they reach dialysis," she said.
The company takes direct referrals from primary care doctors. A nephrologist employed by the clinic evaluates patients, sometimes before they need dialysis. Nurse practitioners work with patients to manage their illness, something that in some cases helped patients avoid dialysis, Shields said.
"I'm telling you, I slow the progression. I keep them off dialysis. That's the beauty of my job," said Shields, who oversees educational programs at four local clinics. "It's FMC's mission to keep them off dialysis."