Three days a week, Ed Parda travels three hours roundtrip from his home in Piscataquis County to a dialysis clinic in Skowhegan for treatment that he needs to stay alive.
Parda, 82, has end-stage kidney disease, meaning his kidneys are damaged and do not filter waste and extra fluid from his blood as well as they should. Treatment options for such patients are lifelong dialysis or a transplant.
During each visit to Dialysis Clinic, Inc., Parda spends about four hours hooked up to a machine that removes blood from his body, filters it and returns the cleaned blood to his body. After DaVita clinics in Bangor, Brewer, Ellsworth and Lincoln turned him away because they were full, Parda landed a spot in Skowhegan, he said.
Parda’s experience is reflective of what many Piscataquis County residents face, which is limited access to health and social services and distance from more populated service centers.
That not even clinics in Greater Bangor could accommodate Parda right away shows how difficult it can be to access the lifesaving treatment, though waitlists fluctuate.
He is one of almost 800,000 adults in the United States living with end-stage kidney disease, according to a report from the Centers for Disease Control and Prevention. Parda declined being put on a waitlist for a kidney transplant because someone younger with a family would benefit more than him, he said.
Piscataquis County is the oldest and third poorest county in Maine. Residents face barriers related to broadband, digital literacy and transportation. The county also has worse health outcomes than the state in some areas, such as cancer deaths and cardiovascular disease deaths, according to its 2021 health needs assessment.
“It seems I have to travel to the four corners of the Earth for treatment simply because Piscataquis County has no dialysis facilities,” Parda said. “I’m not the only one faced with this travesty.”
The lack of clinics near him makes Parda feel frustrated and left out as a patient, he said. Spending so many hours sitting in a vehicle and a dialysis chair is mentally taxing, and Parda compared the experience to having a full-time job again.
Parda, who lives in Williamsburg Township, wonders why Piscataquis County has two hospitals and Katahdin Valley Health Center is expanding in the area but it lacks dialysis services.
Neither Northern Light Mayo Hospital in Dover-Foxcroft nor Northern Light C.A. Dean Hospital in Greenville offers dialysis. In Bangor, Eastern Maine Medical Center sold its three outpatient dialysis clinics to DaVita Inc. about a decade ago, which marked the company’s first foray into Maine.
DaVita spokesperson Matthew Clyburn declined to say whether the company’s centers in Maine have waitlists, but they regularly evaluate patient capacity and staffing, he said.
“We are currently making operational changes in order to serve even more patients living with end-stage kidney disease,” he said in a statement.
Both nationally and in Maine, most outpatient dialysis centers are operated by large national companies that determine where services are located, said Andy Soucier, Mayo and C.A. Dean spokesperson.
“In the current environment, it is increasingly rare and very difficult for small rural hospitals to start and sustain outpatient dialysis services,” he said. “Given this, our focus is on connecting patients to existing dialysis services, including in-person centers in other counties and at-home dialysis.”
Northern Light A.R. Gould Hospital in Presque Isle is the only hospital-operated nonprofit dialysis center in Maine and one of a limited number across the country, spokesperson Karen Gonya said.
The clinic opened in 1997, and today it has 16 stations and offers two shifts a day, six days a week, she said. Staff can care for 64 patients but have 48 per week now. They come from Aroostook and Penobscot counties, and sometimes from farther away if they need dialysis on a temporary basis while visiting family in the region, she said.
Patients travel from as far as Danforth and Fort Kent, which are about 150 miles and 120 miles roundtrip, respectively, she said.
“This is a highly specialized, complex service which requires an enormous amount of infrastructure to establish and maintain,” she said, noting that community fundraising allowed the facility to open.
From 2000 to 2019, new cases of end-stage kidney disease increased nearly 42 percent nationwide, and the number of people living with the disease roughly doubled, the CDC report found.
Parda wishes a dialysis clinic would come to an area near him, either through the Northern Light hospital system or a national clinic. Many of the patients at DCI in Skowhegan travel an hour or longer and have come from places such as Jackman and Caratunk, nurse manager Lorna Vautour said.
The clinic serves 43 hemodialysis patients and operates two shifts Monday through Saturday. It also has patients who do daily at-home or peritoneal dialysis. Across its clinics in Belfast, Fairfield and Skowhegan, Vautour estimated 155-175 patients receive hemodialysis, which is done at the clinics.
DCI also contracts with MaineGeneral Health in Augusta to offer dialysis at the hospital.
The Skowhegan clinic does not have a waitlist, but it did last summer, Vautour said. DCI hired more staff in September and October of last year to create a third shift, but it didn’t end up being necessary because patients either got in, received a transplant or died from their health issues, she said.
Transportation is a barrier for many patients. Because dialysis takes hours, their family members are not always available to drop off and pick them up, she said. DCI works primarily with Kennebec Valley Community Action Program to arrange travel.
Parda relies on Penquis’ Lynx Transportation Service to get to and from his dialysis. He could drive, but because there is a chance he may become dizzy after treatment, Parda doesn’t want to risk the safety of himself and others. Occasionally drivers are late or need to pick up another person on the way home, which drags the process out further, he said.
The state should take a closer look at improving access to crucial services for its residents, particularly veterans, Parda said. In 1967-68, he served as a sergeant in the U.S. Army in Vietnam.
More options need to be in place for transportation, Vautour said, because not all of her patients qualify for KVCAP rides.
“The state needs to realize that dialysis isn’t an optional treatment,” she said. “These people have an organ that failed, and they could die from missing one treatment.”