One in seven Americans, an estimated 37 million people, are affected by chronic kidney disease, especially people with diabetes or high blood pressure. For many, there are only two options when looking for a place to get treatment with dialysis, and they’re not always convenient.
The dialysis industry is very profitable, with two major companies – DaVita and Fresenius – providing 80% of the dialysis in the country and raking in their share of the more than $34 billion in revenues annually, according to a recent article by Scientific American.
Those revenues, some say, come at the cost of patient convenience and care and potentially downplay access to more effective in-home dialysis.
“Dialysis in the U.S. is a total mess,” said Ryan McDevitt, a Duke University business professor and dialysis industry critic. In recent decades, the for-profit dialysis industry has grown substantially and bought more treatment centers while cutting staff to boost their profits.
In Reno, Lee Johnson, 41, had been receiving dialysis about three times a week for more than a year-and-a-half due to his chronic kidney disease. He has been getting his dialysis at Fresenius Kidney Care in Northwest Reno, whose parent company posted $2 billion in operating income revenue of $13.6 billion in 2021.
That is, until what he calls his self-advocacy led to him being trespassed from his local dialysis clinic.
Dialysis is a treatment to clean the blood when the kidneys are unable to do so. The dialysis machine forms a circuit where blood is cleaned with a “bath” of dialysate and wastes from the blood, such as chemicals, salts and excess water, are drained away. It is lifesaving and essential treatment for many who may be waiting for a kidney transplant.
Johnson said he took his diagnosis very seriously and dedicated his life to getting healthier, which included eliminating alcohol and eating better.
“I was diagnosed in March 2021 with late-stage renal failure,” said Johnson. “I took it seriously right away. I started on the diet, I quit doing drugs and alcohol right away.”
Johnson’s dialysis started with a connection through his chest that accessed his carotid artery and then was changed to a fistula in his arm to receive dialysis better. A fistula is an access point made for hemodialysis that joins an artery and vein for faster blood flow.
Since he has taken it seriously, Johnson has been learning more about his dialysis, such as what the blood flow levels should be and how high the saturation of the blood cleaning agent should be for proper treatment.
After the first six months, Johnson noticed his clearance numbers – how much and how quickly waste was removed from his blood during treatments – were going down. He asked to get his medical records to find out why his results were declining.
He said getting his records proved to be very difficult, he said, but eventually, he found out that his lab results were very good.
The issue, Johnson found, was that the dialysis clinic slowed his blood flow through the machine. Instead of a blood flow rate of 400 milliliters per minute, which is where he said it should have been set, his blood flow through the machine was reduced to 250 mL/min.
Optimal blood flow rate can vary based on the tubing and needles used, and is set by a doctor. According to DaVita’s website, the optimal blood flow rate is generally between 300-500 mL/min.
While sitting in dialysis for four hours, a difference of 150 mL/min makes the dialysis go much slower than necessary, and that adds to the total treatment time and cost. Lower blood flow rates could also mean fewer wastes removed from the blood – less effective treatment.
Medicare, which Johnson currently has, covers the total cost of $239.33 per session.
Johnson said there were many instances where he tried to advocate for himself to improve his treatments. He said he was answered with arguments from nursing staff who told him that not only was he creating a disturbance but that he was a security threat.
He said he then turned in grievances to the company, but corporate officials provided the same response as the nurses: he was a disturbance.
Clinic disputes account
Officials with Fresenius’ corporate office disputed Johnson’s account, saying they tried to work with him to continue his care.
“The safety of Fresenius Medical Care North America’s (FMCNA) patients and staff is always our priority,” a Fresenius representative said in an email. “The patient was offered the opportunity to return to the Reno clinic, but refused, and requested a transfer to another dialysis provider. We offered to facilitate the transition and, to ensure he continued receiving needed treatment, to provide care at the Reno facility until the transfer was complete.
“The patient again refused and then requested interim treatment at our Carson City clinic, which we arranged. At no time was treatment denied and the patient is welcome back at the Reno location should they choose to return,” the Fresenius official added.
Johnson said the exchanges with Fresenius staff became heated several times and caused him anxiety. He ended up going to a psychiatrist to receive a prescription for anti-anxiety meds to remain calm during his dialysis treatment visits.
After what he called countless arguments with the staff at Fresenius’ Northwest Reno center, Johnson said he tried to get moved to a different location to continue his treatment.
Johnson said that resulted in being met by police at the lab and given a six-month trespassing violation.
“They told me I had no other choice but [to] remain at my current location,” said Johnson.
Johnson also said he’s not surprised by Fresenius’ response denying his claims.
“They want me to just forget about all the violations of my patient rights in the past and the mental anguish I suffered fighting for my rights,” he said. “And all I really want is the professional medical care I’m promised.”
He said he’s reaching out to disability legal aid, Medicare and his insurance company to express his concerns over how his case has been handled by the clinic.
There are few alternatives for dialysis in Reno, Sparks and Carson City. Nearly all of the clinics are operated by either Fresenius or DaVita.
Johnson now drives three days a week to Liberty Dialysis, the Fresenius center in Carson City, where he said he has been having a much calmer experience with the nursing staff.
He said he wants patients to be aware of what is happening to them as well as advocate for their well-being.
“There’s nothing I can do, and all I want is to get the word out,” said Johnson. “I want to be an advocate for other people. I want to help people. I will show them, because they’re not getting the education. They are withholding information from people.”