Looking back now, DeWayne Cox says his path to kidney failure started in childhood. He lives in Los Angeles now, but he grew up on the South Side of Chicago.
“In the projects mostly, so I fought off gangs. I also had two parents that were both heroin addicts,” he says. “So there was lots of stress and a poor diet.” He was diagnosed with high blood pressure when he was 16, which he managed well with medications, but they made him tired and he had to pee all the time. That really became a problem in his 40s when he got a job with Barack Obama’s presidential campaign in 2008.
“Because I was out in the field and I always had to go to the bathroom,” he says. “And most of the volunteers were young kids. It meant I had to keep up with all the college students.”
So for three months, he stopped taking his medications. Even now, he says he would do it again, but it was a turning point in his health. In 2009, his doctor told him he had kidney failure and he would have to start dialysis.
“I, like most people, didn’t even know what my kidneys were, where they were or what they did,” he says.
But now, after going to dialysis for three-hour treatments three times a week for the last 10 years to have his blood cleaned, Cox is well versed in the science and policy of kidney disease.
He has taken a special interest in Proposition 23, the California ballot measure that would require all dialysis clinics in the state to have a doctor on site at all times patients are receiving treatment.
The measure has gotten attention from several minority health groups, including the California NAACP and the National Hispanic Medical Association, because of the disproportionate impact kidney disease has on communities of color — 57 percent of dialysis patients in California are African American or Latino, according to Medicare data.
Various socioeconomic and genetic factors make African Americans more likely to develop high blood pressure or diabetes, the main conditions that cause kidney disease. And African Americans are less likely to have access to regular health care to prevent these conditions from advancing to kidney failure.
But policies around care are drastically different once kidney failure sets in. In 1972, President Richard Nixon signed a law creating a special benefit under Medicare, requiring the government to cover the cost of all treatment for end-stage renal disease, regardless of age or income.
“Essentially, we have universal health care in this country — for one organ in the body,” is how comedian John Oliver described it in a 2017 episode of Last Week Tonight. “It’s like your kidneys, and only your kidneys, are Canadian.”
‘A Dialysis Clinic on Every Corner’
In the beginning, the program paid for dialysis for about 10,000 patients. Now, there are 468,000 dialysis patients in the U.S., and a massive industry has emerged to care for them. Nearly three quarters of dialysis clinics in the U.S. are owned by two companies: DaVita, Inc. and Fresenius Medical Care. Together, they earned $2 billion in profits last year.
It’s a business built on the backs of people of color, says Magellan Handford, who has worked as a dialysis nurse for both companies over the last 20 years.
“I grew up in South Central L.A., and when I was growing up, there was a liquor store on every corner,” he says. “Now, there’s a dialysis clinic on every corner in L.A.”
The companies don’t invest enough of their profits into care, Handford says, resulting in mice and roaches in clinics, “patients dripping blood all over the place,” and nurses and technicians that are so stretched and rushed, they are forced to take shortcuts and can’t follow proper infection control protocols.
“The industry is built on numbers,” he says. “We need to get patients in and we need to get patients out.”
This is why Handford has been trying to help unionize staff at California dialysis clinics, so they can have more say in clinic operations like this. But for the last four years, they haven’t succeeded. So they turned to the ballot box. SEIU-UHW, the health care workers union, put Proposition 23 on the ballot, it says, to force improvements in patient care the companies aren’t willing to make.
“Doing propositions is the only voice that we have as workers,” Handford says.
Do More Doctors Mean Better Care?
But it’s not clear the specific policies outlined in Proposition 23 can fix Handford’s complaints. There’s little evidence in medical literature that having doctors in clinics at all times will improve patient health at all.
Medicare tested this. In 2004, it reformed payment policies to incentivize doctors to visit their dialysis patients more often. Instead of one or two times a month, it pushed them to go four or more times a month. Then they studied which patients did better.
“Guess what? Doesn’t matter. It doesn’t affect outcomes,” says Jay Wish, a nephrologist at Indiana University. “So after a 13 year or so experiment in trying to bribe physicians to see the patients more often, they realize it doesn’t matter.”
An international study suggests countries like Germany or France have better mortality rates than the U.S. because doctors have a greater presence in dialysis clinics. But Wish says there are too many differences between the health systems and patient populations to draw any meaningful conclusions from the association.
“We dialyze a lot sicker patients than they do,” he says. “In France, you get dialyzed for eight hours, not four … and they serve you wine and cheese during the dialysis. So it really isn’t only about there being a doctor there. There’s just so many other variables that it’s inappropriate to make these comparisons.”
Wish says there could even be negative consequences of Proposition 23 because it doesn’t specify that the doctor has to be a kidney specialist. It can be any licensed physician.
“A doctor that knows nothing about dialysis — that’s dangerous. That’s even more dangerous than having nobody there,” Wish says.
This is why patient DeWayne Cox is against Proposition 23. He’s had his own experiences in the hospital, being cared for by general doctors who didn’t understand the complexities of his condition, prescribed the wrong medication, and made other mistakes.
But he’s scared that Proposition 23 sounds good on the surface and that voters won’t understand the nuances. He accuses the union backing the measure of not truly being interested in patients, but rather, of using the ballot box to gain leverage in its own labor disputes and advance its own agenda.
“When I see these propositions that are put before the voters, who have no idea what we go through and what’s necessary to keep us alive, it makes me angry,” he says. “They’re playing politics. But they’re putting patients like me in the middle of it.”