On a sunny August day, an elderly, fragile-looking black man sits slumped in a wheelchair, eyes closed, outside the doors of a DaVita Dialysis center. The business takes up the corner of a run-down strip mall in Southeast D.C., in a heavily black neighborhood across the river from the Capitol. It’s next door to a liquor store and steps away from an ACE Cash Express check-cashing outlet, a barbershop, and a takeout place. A big sign on the glass warns visitors that firearms are not allowed inside. A handicapped-accessible public bus waits in the parking lot to take other patients home.
It’s midafternoon, but the shopping center is buzzing with knots of people hanging out by the takeout and the barbershop. Everybody seems to know someone on dialysis. One man in a barber’s smock out for a cigarette break says he had a friend who died at a dialysis center. He says ambulances are a constant presence at the DaVita clinic. It’s not unusual for people to die on dialysis: nationally, about one-fourth of patients die in the first year, and six in ten will be dead within five years.
As many as thirty million Americans have chronic kidney disease. If you’re one of them, and you’re white, well educated, and middle class or higher, odds are you’ll get the kind of medical care that will save your kidneys. You likely have private health insurance and get regular checkups. You probably caught your condition early and are taking medication to slow down the disease’s progression.
But if you are poor, less educated, and black, the odds are much greater that your disease will run unchecked and your kidneys will eventually fail. According to the National Institutes of Health, black people are nearly four times as likely to suffer kidney failure as whites. Then you will likely end up on dialysis, spending three days a week, four hours at a time, at a place like this one, as your blood is pumped out of your body, filtered, and pumped back in.
Farther down the sidewalk, waiting for her daughter at the takeout, is Sharon C., a soft-spoken sixty-two-year-old black woman in a sleeveless white dress and Jackie O sunglasses who doesn’t want to give her full name. She sits in a wheelchair, her left foot and ankle grotesquely swollen, the result of poor circulation caused by the diabetes she was diagnosed with in 2005.
Sharon goes to a different DaVita center for dialysis, one near Capitol Hill, where she spends every Tuesday, Thursday, and Saturday. “You can’t miss a treatment,” she says. “You can’t go anywhere.” She says she only got on dialysis two months earlier, when her one functioning kidney finally failed. She is not on the wait list for a transplant. “I need to find a donor,” she says, echoing what patient advocates say is a common misperception among dialysis patients: that you can’t get a transplant unless you find a donor for yourself. “I don’t want to be like this.”
Of the 661,000 Americans with kidney failure, about 468,000 people—more than a third of whom are black—are on dialysis. In the District of Columbia, where the prevalence of kidney failure is the highest in the nation, according to the Centers for Disease Control, there are twenty-three dialysis centers, mostly in Northeast and Southeast Washington, the predominantly black parts of the city that are also ground zero for diabetes and high blood pressure, the two conditions most linked to kidney disease. Another 100 dialysis centers are within a twenty-five-mile radius of the city, again concentrated in the suburbs with the largest minority and low-income populations. In District Heights, Maryland, a DaVita center dominates the busy intersection of Pennsylvania Avenue and Silver Hill Road. In a strip mall just across the street is a clinic run by U.S. Renal Care.
Like check-cashing outlets and payday lenders, dialysis centers—the vast majority of which are for-profit, like DaVita and U.S. Renal Care—are now fixtures in the urban commercial landscape. “We used to say there’s a liquor store on every corner,” said Clive Callender, a transplant surgeon and professor of surgery at Howard University. “Now we say there’s a dialysis unit on every corner.”
The prevalence of dialysis centers in minority neighborhoods is a reflection of policy failures that encourage—indeed institutionalize—class and racial disparities in American health care. These failures include more than just disparate access to the primary and preventive services that could help high-risk patients stave off kidney disease. Public policy effectively steers low-income and minority patients with kidney disease toward dialysis and away from superior options, particularly transplants.
Everyone with kidney failure, also called end-stage renal disease, is covered by Medicare. And Medicare guarantees payment for every dialysis session. As a result, the treatment of kidney failure is a volume-centered business aimed at keeping dialysis centers running. “You fill up a facility with so many stations, you make sure somebody is sitting in each of those chairs around the clock,” said Dennis Cotter, president of the Medical Technology and Practice Patterns Institute. “It’s the Henry Ford production model.”
This system creates an incentive for clinics to keep patients on dialysis until they die.
That’s one reason why low-income patients have a tougher time getting transplants, which is the best treatment for kidney failure: their clinicians may not tell them it’s an option. And the longer they stay on dialysis, the poorer their health is likely to be, making them less viable as transplant candidates.
Patients may also not be able to afford long-term treatment after surgery. While Medicare pays for the transplant itself, it only pays for three years of immunosuppressant medication to prevent the transplant from being rejected by the body, despite the fact that the one-year cost of these drugs is about a third the cost of keeping someone on dialysis. People running out of coverage ration their medication, lose their transplanted kidneys—and end up back on dialysis. Patients like these are less attractive for transplant centers, which want to keep their success rates high.
This unfair system is also a major driver of U.S. health care costs. While kidney failure patients make up about 1 percent of Medicare beneficiaries, they accounted for 7.2 percent of Medicare spending in 2014 and almost 1 percent of the total federal budget. For each patient on dialysis, the government spent $87,638 in 2014. Much of that money goes to just two companies: Colorado-based DaVita Inc. and the German conglomerate Fresenius Medical Care, which together control the lives of 69 percent of dialysis patients.
As common as dialysis is today—there were 6,757 dialysis units nationwide in 2014, according to federal data—it was once a scarce medical luxury. The story of that transformation is both a triumph and a tragedy for federal policy.
Until the early 1970s, a diagnosis of kidney failure was tantamount to a death sentence. In 1962, the journalist Shana Alexander published a now-classic account in Life magazine on the workings of what she called Seattle’s “Life or Death Committee,” a group of seven anonymous citizens convened by the King County Medical Society to decide who would have access to the Seattle Swedish Hospital’s ten dialysis machines. The committee—the original “death panel” if there ever was one—looked at applicants’ income and net worth, marital status and children, occupation, education, and “past performance and future potential.” As Alexander wrote, “With no moral or ethical guidelines save their own individual consciences, they must decide, in the words of the ancient Hebrew prayer, ‘Who shall live and who shall die; who shall attain the measure of man’s days and who shall not attain it; who shall be at ease and who shall be afflicted.’”
In 1972, Congress and President Richard Nixon passed legislation extending Medicare to anyone with end-stage renal disease. It is still the only disease for which sufferers are eligible for Medicare regardless of age. According to lore, the pivotal moment for the legislation was when kidney patient Shep Glazer hooked himself up to a dialysis machine on the floor of the House Ways and Means Committee and pleaded for the money to afford his treatment. “I am forty-three years old, married for twenty years, with two children, ages fourteen and ten,” Glazer told the committee. “If your kidneys failed tomorrow, wouldn’t you want the opportunity to live? Wouldn’t you want to see your children grow up?”
In a testament to government’s power to create new markets, the legislation transformed dialysis from a treatment for the lucky few to a multibillion-dollar industry in the course of slightly more than a decade.
With a guaranteed stream of government payment for every treatment performed, dialysis clinics began springing up nationwide. Some were nonprofit, like the Nashville-based Dialysis Clinic, Inc., established in 1971. Others were for-profit and quickly came to dominate the nascent sector. Today, the two largest providers report annual revenues in excess of $27 billion. Fresenius is not only one of the world’s two largest providers of dialysis services, it’s also the world’s largest manufacturer of dialysis equipment. According to Fresenius’s 2016 annual report, more than half of the dialysis machines worldwide are made by the company. It’s the principal supplier of equipment to the world’s number-two dialysis provider, DaVita.
Medicare currently pays dialysis clinics $231.55 per treatment. That means a clinic like the one in the Southeast D.C. strip mall, with twenty-five chairs, can make $5,788.75 every four hours if all chairs are filled. Assuming three shifts a day, six days a week, that’s $5.4 million per year.
The question today is not who shall live, but how.
“Dialysis is hell,” said David White. In the days before his kidneys failed him, White was the hard-charging IT manager at the D.C. office of a big law firm, with a lot of bad habits to cope with the stress. “I had high blood pressure. I smoked for thirty-two years, a pack and a half a day. I drank too much.” And he never had time for doctors.
When his wife finally dragged him to the emergency room, ten years after his last doctor’s visit, White collapsed on his way to triage. He had “crashed,” poisoned by his body’s own wastes. He was forty-seven years old.
Doctors administered emergency dialysis, inserting a catheter that led straight to his heart. Later, they created a fistula, which looks like a ropy bulge on White’s left bicep. It’s a place where the artery and vein have been grafted together to make it easier to hook up a dialysis machine and ensure good blood flow.
For the better part of six years after leaving the hospital, White went to a clinic in downtown D.C., three times a week, for four hours at a stretch. He couldn’t go back to work, and the sessions left him exhausted with what patients call a dialysis hangover.
“All you want to do is sleep,” White said. “You just want to rest until you feel better. And when you feel better, guess what? It’s time to go back to dialysis again. It’s a pretty strange way to live.”
Providers try to portray dialysis clinics as safe and pleasant. Here’s the for-profit company American Renal Associates, which operates 214 clinics nationally, describing its facilities in a recent quarterly report filed with the Securities and Exchange Commission:
Our clinics generally contain between 15 and 20 dialysis stations, one or more nurses’ stations, a patient waiting area, examination rooms, a supply room, a water treatment space to purify water used in hemodialysis treatments, staff work areas, offices and a staff lounge. Our clinics are also typically outfitted with amenities including heated massaging chairs, wireless internet and individual television sets.
But patients say clinics are far from luxurious. “You can’t eat without the flies coming everywhere,” said Sharon C. She’s not alone. “Dialysis facilities offer a great environment for some bugs, including roaches, flies, and gnats,” reads the “Bugs and Infestations” page on the website of the Quality Insights Mid-Atlantic Renal Coalition, one of several “ESRD Networks” established under federal law to improve the quality of end-stage renal disease care in the United States.
Amenities also can’t hide the fact that dialysis is a grim and grueling process. “Your blood is leaving your body,” said Dennis Cotter of the Medical Technology and Practice Patterns Institute. “It’s going through a filter and getting returned. That in itself is traumatic because the blood encounters a lot of foreign surfaces, and there’s a huge problem with a large variety of infections.” Especially dangerous are the chest catheters used primarily for emergency dialysis, as in the case of David White, but that remain indefinitely in some patients. They have been called the “great white tubes of death” because of their ability to send pathogens straight into a patient’s heart and bloodstream. (Studies have shown that patients with catheters are at least three times more likely to die from infections than patients with a fistula.)
Patrick Gee, who lives near Richmond, Virginia, said he remembered the first time he set foot in a dialysis clinic, after his diagnosis in April 2013. “I stood there and cried,” he said. “I was looking at amputees. I was looking at people who were brought in and out by paramedics. Nobody had a smile on their face. It looked dead.”
Patients often experience cramps, chills, fever, and crippling fatigue as their bodies attempt to cope with a process that tries to accomplish in four hours what a pair of healthy kidneys would have done over the course of two to three days. Gee said it was all he could do to keep his eyes open on the drive home after a session. “One time I got in the garage and parked the car and my wife found me asleep behind the wheel,” he said.
Part of what’s so exhausting about dialysis is that patients’ hearts must cope with the stress of pumping their blood through a machine, usually at the rate of a pint per minute. According to the U.S. Renal Data Service, 41 percent of deaths among dialysis patients are due to cardiovascular problems. “I can’t remember if the ambulance came for me once or twice,” said David White, who recalled one episode when his heart wouldn’t stop racing for thirty minutes. “I saw one person almost die. It was really gruesome. After he was gone, there was a pool of sweat around his chair. It was unbelievable. . . . I saw other people carried out. It always goes through your mind that you’ll never see that person again.”
It’s tempting simply to blame the dialysis companies for being callous and predatory in their treatment of dialysis patients. Earlier this year, HBO’s John Oliver dedicated an entire episode of Last Week Tonight to the questionable practices of dialysis companies and ridiculed the flamboyant CEO of DaVita, Kent Thiry, for riding into company meetings on horseback, dressed as a Musketeer and referring to himself as the “Man in the Iron Mask.” Oliver also aired a clip of Thiry comparing the management of his dialysis business to that of Taco Bell. “If I had 1,400 Taco Bells and 32,000 people who worked in them, I would be doing the same stuff,” Thiry tells a group of business students at UCLA.
What Oliver didn’t say, though, is that the government’s current method of paying a set amount per dialysis treatment exactly encourages Thiry’s approach. The fee that Medicare pays dialysis providers is called a “bundled” payment, and it varies slightly from year to year depending on the costs reported to the government by providers. The current $231.55 per treatment is intended to cover all services, equipment, supplies, and drugs involved in a single session.
The point of the bundle is to keep costs low for the government by preventing providers from nickel-and-diming Medicare with separate bills for various procedures. But it also encourages providers to perform as many treatments as they can at the lowest possible cost to maximize revenues. That prompts clinics to err toward a one-size-fits-all approach. Dialysis centers are, in fact, like Taco Bells.
There are better ways to treat kidney failure than the in-center hemodialysis that most kidney failure patients endure. One is peritoneal dialysis, which can be performed at home. Patients pump dialysis fluid into their abdomen to absorb toxins, then pump it out again in what’s known as a fluid exchange. It’s a gentler process that also leads to better survival rates and quality of life, including the ability for many to continue or go back to work. But in 2014, just 9.3 percent of patients diagnosed with kidney failure began treatment this way.
“The typical center, the easiest thing to do is just put them on in-center hemo[dialysis],” said surgeon Joseph Melancon, chief of the George Washington University Transplant Institute. “That’s one set of skills [for the staff]. Everybody is the same.”
Putting someone on peritoneal dialysis would require more staff with different skills, including the ability to train patients to perform the procedure at home. As a result, the patients most likely to be on peritoneal dialysis are the ones who have the resources to demand it. In 2014, nearly 10 percent of whites and more than 12 percent of Asians with kidney failure were using peritoneal dialysis, compared to 7.8 percent of blacks.
The fee-for-treatment structure also means there’s less incentive to invest in innovation that could improve dialysis patients’ lives. Why innovate when the existing model guarantees steady and growing revenues? Add the fact that the two biggest firms have already crushed or purchased almost all the competition, and the result is that the process of dialysis has barely changed over the last forty years.
The technology of modern dialysis rests on two twentieth-century breakthroughs. In 1944, Dutch physician Willem Kolff invented the first “artificial kidney” in Nazi-occupied Holland using, among other things, sausage casings, orange juice cans, and a washing machine. After the war, Kolff sent four of his (by then refined) machines to the United States, where they were successfully used to treat soldiers suffering from kidney failure during the Korean War.
The second breakthrough was in 1960, when Belding Scribner and Wayne Quinton, working at the University of Washington in Seattle, invented the “Scribner shunt,” a U-shaped Teflon tube inserted into a patient’s arm that made it possible to connect to a machine as often as necessary. Before then, the damage done to a patient’s veins with each treatment made it impossible to administer more than a few sessions.
While the Scribner shunt has since been replaced by the fistula like the one in David White’s arm, today’s dialysis machines are not far removed from Kolff’s original invention. “It seems unimaginable that dialysis care has made so little medical and technological progress,” wrote Gary Peterson, founder of the news site RenalWEB, in a 2015 essay. Despite early expectations that “our state-of-the-art technology of 1975 would be quickly surpassed and replaced,” Peterson wrote, today’s machines are essentially no different from those developed in Europe in the 1970s. Expected breakthroughs with stem cells, portable dialysis machines, and xeno-transplantation have yet to materialize.
In its 2015 annual report, Fresenius referred to its ongoing development work into a “portable artificial kidney.” It merits one paragraph in the 215-page report, and there is no mention of when this technology might become available.
Here’s where the big companies do innovate: squeezing ever more pennies out of Medicare. With few competitors left to buy, the big companies are now entering into “joint ventures” with kidney doctors, who are offered ownership stakes in new clinics that are typically built with borrowed funds. In 2015, the private equity–owned American Renal Associates, which owns 214 clinics exclusively through this model, went public with a $100 million IPO. According to its most recent public filing, the company now operates in twenty-five states with 379 nephrologists as “partners.”
Because dialysis is exempt from a federal law that prohibits doctors from referring patients to clinics and laboratories that they own, nephrologists are free to refer as many patients as possible to their own clinics. In fact, the dialysis companies are counting on nephrologists to keep their centers filled. “Our medical directors refer patients to our clinics,” read the 2016 annual report of American Renal Associates.
The most tragic consequence of a system that incentivizes keeping people, especially poor people and minorities, on dialysis is that it also keeps them from getting what is beyond doubt the best treatment for kidney failure: a transplant.
“A successful transplant gives you almost a normal life expectancy, particularly if you’ve never been on dialysis,” said GW transplant surgeon Joseph Melancon. Between 76 percent and 85 percent of transplant recipients survive five years after transplant, compared to just 42 percent for patients on traditional hemodialysis. In 2014, of all patients suffering from end-stage renal disease, fewer than one in five black patients with kidney failure were transplant recipients, compared to just over one-third of white patients.
Today, David White is healthier than he’s ever been, thanks to a kidney transplant he got in 2015 at George Washington University Hospital’s Transplant Institute with the help of Melancon. But he’s one of the lucky ones. The Transplant Institute happens to be in the same building as White’s former dialysis center. When the institute opened, White got on the elevator and signed up for the transplant wait list.
Getting a transplant is an uphill battle for anyone; there were just 17,914 kidney transplants performed in the United States in 2014 with 88,231 people on the wait list. But poor and minority people with kidney failure face additional systemic obstacles. Emory University researcher and associate professor Rachel Patzer has found, for instance, that black patients living in the southeastern United States have a 59 percent lower rate of transplant than whites, and that blacks living in the poorest neighborhoods are 67 percent less likely to be put on wait lists than poor whites.
One reason, mentioned before, is that Medicare doesn’t pay for long-term treatment of transplant recipients. So kidney patients who can’t afford to pay out of pocket for immunosuppressant medications after three years either take themselves out of the running for transplant or are discouraged by transplant centers from applying.
At Piedmont Healthcare in Atlanta, for example, the transplant program’s website includes a page on “Financial Considerations” for prospective transplant patients. Among other things, the page notes that “[a]ll transplant patients are advised to make long-term financial plans for transplant.” Patients “whose financial or insurance situation is uncertain,” it goes on, should “engage in fundraising efforts to establish a ‘safety net’ of funds they can access for post-transplant costs”—basically asking patients to run a Kickstarter campaign to finance the procedure.
Dialysis patients are also simply less likely to learn that transplant is an option—perhaps because each patient a center refers away means one less Medicare payment. Howard University surgeon Clive Callender said some of his black patients were told they’d be eligible for transplant “later,” after they spent some time on dialysis. “They were told, ‘We’ll dialyze you for a year or two and then after that we’ll put you on a transplant list,’ ” he said. “Of course, the longer you’re on dialysis, the poorer your outcome is, the more likely you are to reject your transplant, and the more likely you are to die.”
While federal regulations require patients to be educated about transplant, “there are really no rules or regulations about what that education should look like,” said Emory’s Rachel Patzer. “We don’t know if a patient is being asked, ‘Hey, do you want a transplant, yes or no?’ and that’s the end of the discussion.”
In fact, there’s every reason to make that education perfunctory at best. Doctors even trade anecdotes about competition among nephrologists and surgeons for the “best” patients, because the patients most likely to last the longest on dialysis—namely, those who are younger and healthier—are also the best transplant candidates. “I think there really is a financial incentive for a dialysis nephrologist—especially if they’re an ‘easy’ patient, a low-maintenance patient—to keep them on dialysis as opposed to referring them to transplant,” said Joanne Bargman, a nephrologist and professor of medicine at the University of Toronto.
Transplant surgeon Joseph Melancon is more blunt: “I’m not saying it’s typical, but I’ve definitely heard it said, ‘Wow, you took my best patients and gave them a transplant when they were doing so well on dialysis’—which is exactly the opposite of what you want.”
Among the patients never told about transplant when starting dialysis was Patrick Gee. Gee eventually got on a wait list, at the Virginia Commonwealth University’s Hume-Lee Transplant Center, but he feels he’s lost valuable time. “When I was told that my kidneys were failing, I should have been told right then and there I could have had a transplant instead of dialysis,” he said.
The Medicare entitlement for dialysis was begun with the best of intentions: to save lives and to democratize access to a treatment that was then available only to a few. But over the last forty-plus years, the system has evolved in a way that calcifies the gross racial and class disparities in our treatment of chronic kidney disease and kidney failure.
It doesn’t have to be this way. Nor would it be if kidney disease and kidney failure were problems largely confronted by the middle class. It’s because the victims of these diseases are politically invisible that we’ve come to accept substandard care as the norm and to tolerate the exploitation of their suffering for profit.
That means that an essential way to fix the problem is to end the disparities in preventive and primary care that lead to the disparate incidence of kidney disease in the first place. In a landmark report, the Institute of Medicine found that black diabetes patients were less likely than white ones to get important blood tests, eye exams, and flu shots, and more likely to use emergency rooms for their care instead of doctor visits. And despite the importance of good primary care in detecting kidney disease—which is often symptomless until a patient “crashes”—so-called health professional shortage areas are disproportionately located in poor and minority communities.
Erasing decades of institutionalized discrimination is a societal challenge that must remain a long-term priority. But there are things that can be done now to ease the suffering of kidney disease patients in the short term.
First, we should improve the lives of people currently on dialysis.
While it’s likely too late to unwind the clock on dialysis as a for-profit enterprise, there’s plenty of evidence that providers respond to financial incentives. Before 2011, for example, Medicare allowed providers to bill separately for the drug erythropoietin, or EPO, which clinics gave dialysis patients to stave off anemia. These separate payments caused its use to skyrocket, accounting for as much as 11 percent of the costs of caring for end-stage renal disease patients in 2004 while doing nothing to improve their health. Once Medicare ended separate billing for EPO, its usage immediately declined.
The EPO example shows how the right payment policy can prevent bad outcomes. It can also reward improvements in quality. To its credit, Medicare has begun to move in this direction. In response to ongoing concerns about the quality of dialysis, the Centers for Medicare and Medicaid Services (CMS) began providing “Star Ratings” of dialysis facility quality in 2014.
But the clinical outcomes tracked by the CMS are too easily gamed. In a keynote speech before the Annual Dialysis Conference in 2015, the University of Toronto’s Joanne Bargman recounted interviews in which American nephrologists told her about all the ways in which they got the lab results they wanted, such as rounding down a person’s weight or taking “strategic blood draws” at just the right time to get the best numbers.
The CMS’s current metrics also don’t include many of the measures that patient advocates say are the most meaningful to them, such as whether they can go back to work. In a survey of dialysis patients reported in the September 2016 American Journal of Kidney Diseases, patients said the outcomes they prioritized were “fatigue/energy,” survival, ability to travel, “dialysis-free time,” and impact on family.
“In the 1970s, people used to keep their jobs,” said Renal-WEB’s Gary Peterson. “That’s where we started dialysis, and I can’t believe we’ve gone backwards from that. But if you set up employment as a financial incentive, [clinics] are going to make sure that patients have gentle dialysis treatment, that they’re well rested, and that they have as few complications as possible.”
The second thing to do is to give low-income and minority patients a fairer shot at getting a kidney transplant. That means, at a minimum, making sure Medicare pays for lifetime coverage of immunosuppressant medications for transplant patients, instead of just thirty-six months. The original rationale for the current policy, established decades ago, was that transplant patients would eventually get jobs and private insurance, but the instability of work in the modern labor market and the price of coverage make this reasoning far less plausible today. A likelier explanation for the policy’s continued existence is lobbying by the dialysis industry, which benefits from keeping patients on dialysis and not “losing” them to transplant.
Switching to lifetime coverage would save both lives and money. While the initial cost of a transplant is expensive—about $250,000—the cost of immunosuppressant medicines to maintain a transplant is around one-third the annual cost of dialysis, which runs between $80,000 and $100,000. Studies conclude that, factoring in indirect costs of dialysis like increased emergency room visits, a transplant becomes cheaper than dialysis after about 2.7 years.
Finally, federal policy can help stop the predation of low-income dialysis patients by increasing the amount of screening and early treatment people receive for kidney disease so they are less likely to end up on dialysis in the first place. As always, the key is designing a payment model that rewards prevention and early treatment.
In October 2015, under the authority of the Affordable Care Act, the CMS launched an initiative to support pilot programs providing comprehensive, “person-centered” models of care for kidney disease patients. One encouraging program is REACH Kidney Care, developed by the nonprofit Dialysis Clinic Inc. (DCI). In a white paper, the organization says it intends to better “manage” patients who are not yet in kidney failure by controlling high blood pressure, diabetes, and other conditions that could hasten the disease’s progression, and referring more people for transplant. Patients who do go on dialysis receive better education on options like peritoneal dialysis and on how to avoid hospitalization and other complications. In a pilot implemented in Spartanburg, South Carolina, DCI reported that 37 percent of its dialysis patients started treatment at home (more than three times the national average) and two-thirds avoided hospitalization before their first dialysis session (versus one-third nationwide).
One important way to encourage this kind of innovation is to roll back over-consolidation in the dialysis industry. While nonprofit and smaller dialysis providers still exist, their numbers are dwindling.
“The big commercials can do things we can’t even begin to do just because of their size, such as a research project on 10,000 of their patients,” said Barry Smith, president and CEO of the nonprofit Rogosin Institute. “But we can be creative and we can change things in a short period of time.” Like DCI, Rogosin is working on ways to prevent patients from ending up on dialysis. “The other thing we want to do, which is not what DaVita or Fresenius would want to do, is put ourselves out of business in terms of dialysis,” Smith said
But if consolidation puts organizations like Rogosin and DCI out of business first, patients will suffer.
With the ultimate fate of the Affordable Care Act still uncertain under Donald Trump and a Republican Congress, it’s unclear what will happen to the experiments begun at the CMS to improve the lives of kidney patients. At the same time, as Phillip Longman argues elsewhere in this issue (“How Big Medicine Can Ruin Medicare For All,” page 29), Democrats who want to move toward single-payer or a robust public option must figure out how to lower the cost of delivery to have any chance of succeeding. Fixing how Medicare treats end-stage renal disease, which accounts for 7 percent of its budget, would be a good place to start.
Meanwhile, time is running out for patients like Patrick Gee, who is on dialysis, and David White, who will eventually face the loss of Medicare coverage for his transplant medication if Congress doesn’t act. “I’m eighteen months out, so I’ve used half my time,” said White. One thing he knows is that he doesn’t want to go back to dialysis. “I’m going to figure it out before then.”