Amy Waterman figures she saves federal taxpayers about $1 million for every five Medicare patients she persuades to switch from dialysis to a kidney transplant.
That's a conservative estimate for how much money Medicare saves when patients undergo kidney transplant surgeries, an option that can add years to their lives. The challenge, she said, is getting doctors and nurses to provide transplant information to the nation's half-million patients with end-stage renal disease — at least, in a way that they understand.
"Every patient has the right to know about every option available to them," said Waterman, a health psychologist at the Washington University School of Medicine in St. Louis who has studied why patients lack information about kidney transplantation. "The idea of 'We don't want to know about people who want this but who aren't educated' isn't OK with me."
The high national cost of dialysis — for taxpayers, insurers and patients — has become a hot-button issue as lawmakers debate ways to improve the nation's health care system, amid questions about whether patients receive adequate access to alternatives such as kidney transplantation.
Despite medical and financial advantages to transplantation, a Tribune-Review investigation published in September found that thousands of patients have started dialysis without hearing about the option. Money is a factor: Medicare pays $18.4 billion a year for dialysis, and some kidney doctors receive money for each patient on a dialysis machine, experts said.
"I urge CMS (the Centers for Medicare and Medicaid Services) to follow up with doctors that fail to inform a large portion of their end-stage renal disease patients about kidney transplantation," Rep. Joe Sestak, D-Delaware County, wrote this month to Medicare leaders after reading the Trib investigation. "CMS should more strongly encourage providers to inform patients about all available options."
Health care providers and kidney disease groups say they are creating programs to overcome the failure to inform. After a 2008 rule crafted by Congress, the National Kidney Foundation plans to kick off a program in January that would teach people with chronic kidney disease about their treatment options.
The foundation can claim some success: 15 percent of the nation's kidney transplants in 2007 went to people with renal failure who were able to undergo surgery without starting dialysis, according to the latest research by the U.S. Renal Data System, a nonprofit that collects and analyzes data on kidney failure. That's up from 10 percent in the early 1990s.
The USRDS has not released more recent data, and the Trib's September investigation was based on 2006 data, the most recently available information at the time.
Breaking the misunderstanding
If people with chronic kidney disease find out about transplantation while their organs are working, they might be able to undergo the surgery without starting dialysis, giving them the best odds of long-term survival, experts said.
"Our mandate is to reach those folks earlier in the process to slow the progression of their illness," said Deborah Hartman, regional vice president for the foundation's Western Pennsylvania chapter.
Proper education is important because people need to realize that kidney transplantation is no longer an experimental treatment, and many patients do better with a transplant in the long-term than by remaining on dialysis, said Dr. Abhinav Humar, chief of transplant surgery at the University of Pittsburgh Medical Center.
"You'd be surprised at how many people, patients and even providers, think of (transplantation) as a method of last resort," Humar said, noting that UPMC is sending transplant coordinators to dialysis clinics to educate patients about transplantation. "(Transplantation) is, no question, a better option for the patient."
Patients "get stuck" on their way to receiving transplant information for a lot of reasons, said Teri Browne, a researcher at the University of South Carolina who participated in a CMS technical expert panel on the topic.
Social workers in dialysis clinics often are too overburdened with patients to take the time needed to provide detailed information and answers, she said. Other times, patients starting dialysis are too overwhelmed to comprehend all of their options.
"There really is a misunderstanding for a lot of different reasons about what getting a transplant means," Browne said.
Program makes difference
Yet again, people often don't fully understand what it takes to receive a transplanted kidney, said Rebecca Hays, a researcher at the University of Wisconsin Hospital and Clinics. They might meet with a doctor one time and think that's all they need to do.
"There are people who get a referral who think they're on the waiting list when they're nowhere near it," Hays said.
A lack of information, coupled by fear of the surgery, causes some eligible patients to pass up a transplant evaluation, a required step in order to get on the nation's waiting list, Waterman said. More than 87,000 people in the United States are waiting for a kidney.
Waterman's program, "Explore Transplant," starts with having nurses or social workers sit down with patients to talk about what's important to them in their lives — rather than the medical research on transplantation, she said. The idea is to determine what motivates patients and how ready they are to consider surgery.
Patients in the program were more likely to seek kidney transplants from living relatives or friends. Nine of 10 dialysis patients in the program read about live-donor kidney donation, compared to 33 percent of people who received standard education.
Patients in the program were more likely to act on the information, too: More than a third contacted a transplant center about undergoing an evaluation, while just 22 percent of the control group did.
Education pays off
Harold Frank Henry of Florissant, Mo., said the program persuaded him to undergo a kidney transplant evaluation. Henry, 55, was undergoing dialysis for three years and had dismissed transplantation as something he didn't need because he was so comfortable with dialysis.
"Initially, I thought that being alive was enough," said Henry, a minister who has battled diabetes and high blood pressure since the 1980s. "I got used to the dialysis. Then I heard all that transplantation could do for me, even though it's not a cure, and it could give me more energy, more freedom, and I can go to places without having to worry about dialysis."
He was listed for a kidney transplant seven months ago.
"I'm just waiting for the call now," said Henry, who undergoes dialysis three times a week at Barnes-Jewish Hospital in St. Louis. "I hope I can find the quality of life I had before."
Waterman received a $900,000 federal grant to test her program in the St. Louis market. If five of the 133 patients who were educated chose to receive a transplant when they would not otherwise have considered surgery, she said, the government broke even on its investment in the pilot program.
Now, with a second grant for the same amount, Waterman is taking her program on the road to educate dialysis providers how to communicate with patients.
Officials at a Pittsburgh-based group that represents dialysis clinics and transplant centers across Pennsylvania and Delaware, called End-Stage Renal Disease Network 4, asked Waterman to hold a seminar at its annual meeting in April.
The goal is to have clinics refer more patients for transplant evaluations, said Judy Stevenson, the regional network's executive director.
"There's a lot of misinformation among patients, and they're afraid," she said. "They need somebody to come in and give them the information and not rely just on what they hear on the street."