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Tillamook dialysis patients say they're in life-threatening limbo after closure

A Texas-based company, U.S. Renal Care, vowed to keep its clinic open until patients had alternatives, but some of them say that's not happening
Sterling Hanakahi, 73, and Anita Hanakahi, 70, of Tillamook say they were blindsided when Texas-based U.S. Renal Care executives announced they would close their kidney dialysis center in the coastal community Feb. 23. Anita has relied on the center for the past nine years. For her and 10 other local patients, she said, local dialysis treatment is a matter of life and death. | COURTESY OF ANITA HANAKAHI
February 29, 2024

Executives at U.S. Renal Care promised not to close their Tillamook dialysis clinic on the Oregon Coast until all their 11 remaining patients had alternative treatment lined up, but some of those patients say they continue to wait in a life-threatening limbo.

"They say they're giving us choices, but we're only presented with their choices," said patient Anita Hanakahi of Tillamook. “For them to pull a gut punch like this in the dead of winter is unforgivable.”

 The clinic located at Adventist Health Tillamook was initially set to close Feb. 23, sparking widespread media coverage of patient concerns that some of them would die as a result of a lack of warning and nearby alternatives. 

When asked by The Lund Report if the company were complying with Oregon law calling for orderly transitions for patients when facilities close, U.S. Renal Care told The Lund Report the company was backing off that timeline. Thomas L. Weinberg, the company’s executive vice president, said in a Feb. 12 email that the clinic would remain open until its 11 remaining patients have alternative dialysis treatment. The company did not respond to a recent follow-up request for comment.

However, Sharon Shreve of Tillamook said the company closed the clinic on its original schedule other than train people for home care — an approach that studies have found to be a daunting and risky task, especially for the elderly.

"They're only keeping it open to patients being trained for in-home ... dialysis," said Shreve, who is responsible for taking her 71-year-old husband Michael to and from dialysis appointments.

Jonathan Modie, a spokesperson for the Oregon Health Authority, told The Lund Report he's not sure how many of the remaining 11 patients are being trained for in-home dialysis care.

"Several of the 11 patients are transitioning to home treatment (hemodialysis or peritoneal dialysis), and the remaining patients to end-stage renal disease treatment facilities that are between 50 and 75 miles away from the Tillamook site," Modie said.

Hanakahi, 70, said she was one of only two or three dialysis patients being trained for in-home care by the Feb. 23 closure. In-home dialysis is not a viable alternative for her, she told The Lund Report.

"I was leaning toward home dialysis, but it's just not going to work," Hanakahi said. "We would need a separate room as well as a dedicated electrical line and separate storage space, and we just don’t have that kind of room. I'm going to do hemodialysis at another facility."

Going to another facility also requires some tough choices.

Trying to find an opening at DaVita Lincoln City Dialysis 60 miles away would mean leaving the doctors she has worked with for the past 10 years. Her other alternative also lies 60 miles away over the Oregon Coast Range: Fresenius Kidney Care in Forest Grove.

"I hate to take the drive," said Hanakahi. "The road is so bumpy, and my osteoporosis is so bad, that I've broken bones crossing the Coast Range. However, I might not have a choice."

Rides offered — for now 

Officials at NW Rides, a service of the Tillamook County Transit District, have offered rides to dialysis treatment for patients displaced by the closure of the clinic.

The service ordinarily provides non-emergency transportation to people who belong to the Columbia Pacific Coordinated Care Organization, a regional insurer that administers the state’s program for low-income people,  the Oregon Health Plan, in Tillamook, Clatsop and Columbia counties.

NW Rides received a donation from U.S. Renal Care that, coupled with a $454,000 grant from the Oregon Department of Transportation, can provide rides for the displaced patients.

However, there are some wrinkles in that plan.

Brian Vitoolie, the general manager of the Tillamook Transportation District, told The Lund Report that the amount of U.S. Renal Care's donation remains uncertain.

"We're still working through that donation amount," Vitoolie said. "We're waiting on confirmation on the number of patients. I've heard everything from 11 patients to seven patients to three patients. We're trying to figure out that number."

Also, U.S. Renal Care's patients are not members of the Columbia Pacific Coordinated Care Organization. 

 "I don't know how long-term the funding is," Vitoolie said. "I think it's something that could be longer term if they're eligible for the CCO, and they can be folded into our providers as long as they need."

The $454,000 in state COVID recovery funds was originally intended to pay for intercity transportation.

Public transportation is already financially strained along the northern Oregon Coast, Vitoolie said.  "We just don't have enough capacity to do everything we need to do," he said. "We're struggling with a driver shortage, and we're trying to work in these trips." 

Shreve said assistance from NW Rides is welcome and appreciated, but also frustrating. She called the service Feb 26 to see if she could arrange a ride for her husband to Lincoln City on March 1. As of Feb. 28, she said, she hasn't heard back.

Another issue is that her husband's dialysis appointment runs from 2:30 to 7 p.m. That still requires a trip by her in the dark to retrieve him, she said.

The couple's situation remains uncertain, she added. "I don't know if we're going to Forest Grove or Lincoln City. They're often predicting snow over the Coast Range -- anywhere from 3 to 8 inches. I don't really want to drive that."

Still, she said is grateful for the potential of transportation through NW Rides. "That's going to take some of the pressure off," she said. "It's a matter of getting everything signed up. I don't know how long that's going to take, but we're making some progress. Maybe we don't have to bear all the responsibilities of doing all the driving to get patients to dialysis."

Petition launched

A friend of one of the dialysis patients’ family placed a petition on earlier this month demanding that local dialysis care continue in Tillamook. As of Feb. 28 it had gathered 491 signatures.

"Tillamook is a pretty small town," Nicole McEachern, who started the petition, told The Lund Report. "Everyone kind of knows everyone. I have known one of Sharon’s granddaughters since I was about 4. Another one of her granddaughters is my husband’s boss’ wife."

U.S. Renal Care's announcement rocked the coastal community of 5,000 people in a county of 27,000 people, McEachern said. “It may be a small town, but we need places like this as well as big cities," she said.

"No one should have to worry if they’re going to live or not just because a business decided this small town's dialysis unit isn’t profitable for them or for whatever reason," she said. "I am doing my best to make noise and get their voices heard, but we also need this spoken loudly for U.S. Renal Care to hear."U.S. Renal Care leaves Tillamook with a lot of sour feelings in its wake, Hanakahi said.

"They put us in a bad way," she said. "They also put their workers in a bad way. They thought these jobs were forever, not knowing they would be unemployed so quickly."

Hanakahi, who is currently recovering from pneumonia, added she has an attorney friend who is looking into the situation pro bono.

"He's trying to work out a solution without filing a lawsuit," she said. "No one is happy."