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Felisa Rapisura of Mililani, 85, wakes up at 3:45 a.m., three times a week, to apply makeup before her dialysis treatments several miles away in Waipahu.
And she considers this schedule an improvement on her old treatment time slot, which ended around 11 p.m.
Rapisura is one of 4,000 Hawaii kidney disease patients on dialysis, a life-saving treatment that cleans a patient’s blood when kidneys fail. Treatments are usually required three times per week for about four hours.
But patients are further burdened by a shortage of dialysis centers, in part due to the state’s lagging inspection and certification process.
Rapisura lives near a dialysis center in Mililani that she can’t use. Even though it was built three years ago, it still awaits certification.
Eighty-five percent of Hawaii’s dialysis patients are insured by Medicare or Medicaid, two government-run programs. Dialysis center operators can’t be reimbursed for treating those patients until state inspectors confirm the facility meets federal standards.
The state’s largest private insurer, Hawaii Medical Service Association, also requires customers to visit federally certified dialysis centers. An outpatient dialysis session can cost up to $1,500 for the average patient, said Pliny Arenas, an executive with U.S. Renal Care.
But in Hawaii, certifying new dialysis centers usually takes about three years. Most other states take nine to 12 months, according to Steve Nottingham, an executive of Fresenius Kidney Care. Fresenius is the parent company of Liberty Dialysis, one of two dialysis center operators in the state.
Inspecting and certifying new dialysis centers isn’t a top priority for the short-staffed Hawaii Department of Health, which inspects facilities on behalf of the federal government. The feds place a higher priority on complaint investigations, for example.
There are 29 dialysis centers statewide, run by either Liberty Dialysis or U.S. Renal Care. Two centers built in 2015, one in Mililani and another Moiliili, are still awaiting certification.
“If these patients don’t come (to dialysis) for a week or a month, they’ll die too,” said Rapisura’s daughter, Mellissa, who drives both her partner and mother to Liberty Dialysis Waipahu for treatment. “I don’t understand the priority list.”
The Rapisuras aren’t the only family inconvenienced by delays in certifying dialysis centers.
“Why cannot you just get it certified and open them up?” said patient Donald Ortogero, who recalls regularly staying awake until 5:30 a.m. after he had his late-night treatment shift.
“It’s very frustrating to drive by the (Mililani) center every day,” said Ken Enomoto, who lives within walking distance of the uncertified center. Like Rapisura, he has to drive to the Waipahu center for treatment.
Uncertified facilities are fully stocked but only capable of serving patients with certain commercial health insurance plans — usually obtained through their employers.
The delays in certifying dialysis centers often force newer patients to take inconvenient treatment slots that interfere with their regular schedules and arrange rides with relatives.
It’s common for patients to feel physically exhausted and unable to drive after a four-hour dialysis treatment.
Other dialysis patients endure lengthy hospital stays due to the shortage of outpatient treatment centers.
“It’s hard enough just being on dialysis, but to have to endure the horror stories … when there’s a center that’s open” but not taking many patients, said Glen Hayashida, head of the National Kidney Foundation of Hawaii. “It’s almost like dangling something in front of people.”
One in seven Hawaii residents, or 168,000 people, suffer from chronic kidney disease. Nationally, the figure is one in nine.
Native Hawaiians, and other Asian and Pacific Islander populations, are especially susceptible to the disease, and they represent a significant portion of the state population.
About 700 additional Hawaii residents need dialysis treatment every year, according to statistics from the Health Services Advisory Group.
“The majority of the (patient) growth is on the west side (of Oahu),” said Jocelyn Saccamago, regional vice president of Liberty Dialysis Hawaii. “The majority of our clinics are full on the west.”
Four new Hawaii dialysis centers with a total of 78 dialysis chairs were certified in the last five years. Other centers have also added chairs in recent years.
A 24-chair center operated by Liberty Dialysis in Mililani is one of two dialysis clinics only able to take patients with commercial, or private, insurance policies. Liberty Dialysis did not confirm the number of patients it’s currently able to serve.
A 17-chair center run by U.S. Renal Care in Moiliili is currently serving two patients. There are 25 patients with insurance through HMSA, Medicare or Medicaid on a waiting list.
Many kidney disease patients don’t know their kidneys are failing until they end up in the emergency room, said Hayashida of the National Kidney Foundation, especially if they don’t see a doctor regularly.
It’s not unusual for a patient’s first treatment to be in the hospital. Some may only have to dialyze in the hospital for a few days until outpatient treatment can be arranged, but others remain hospitalized for a month or longer.
The U.S. Centers for Medicare and Medicaid Services will “reduce payments” to hospitals that discharge and readmit the same patient multiple times within 30 days. The patient readmission rate is used as a way to determine the quality of a hospital’s care.
That effectively means patients who receive dialysis in the hospital are not discharged between treatments since they’re usually treated three times per week.
This has been a problem for years, according to written testimony to the State Health Planning and Development Agency, which decides whether to allow the construction of new health facilities.
Paula Yoshioka, an executive at Queen’s Health Systems, testified in 2014 that there were four to six new hemodialysis patients per week seeking placement in an outpatient facility. This drives up the cost of care and needlessly takes up “critical” bed space in the hospital, she wrote.
The same was true for four to eight patients at Straub Clinic and Hospital on any given day in 2014, according to testimony.
Gerlynn Silva, a high school counselor in Mililani, stayed in Kuakini Medical Center for more than a month while waiting for an outpatient slot. The hospital nurses were all familiar faces, and she often had the room to herself.
But she depleted her sick leave during the hospital stay. Silva’s coworkers covered for her, but she lost out on pay and the summer break.
“It was very, very rough,” she said.
If new patients are lucky, they’ll get an outpatient slot at a dialysis center near their home — but they often have to take early morning or late-night treatment slots that end as late as 1:30 a.m.
Many patients with late-night treatment hours must drive themselves or rely on relatives for rides.
Others are dependent on TheHandi-Van, a public van service for disabled residents that has limited hours in most parts of the island.
Drivers sometimes arrive ahead of schedule, making patients feel pressure to end their treatment early, some told Civil Beat. Other times, the vehicle doesn’t come at all.
Dialysis patient Lucinda Bustillos says TheHandi-Van has been late to pick her up on several occasions. She’s called the dispatch crew to complain enough times that they recognize her name, she said.
“I feel sickly. I don’t want to sit here for an hour,” Bustillos said. “I’ve seen people here waiting for two hours.”
The U.S. Centers for Medicare and Medicaid Services contracts with the state health department’s Office of Health Care Assurance inspectors, called “surveyors,” to ensure health care facilities are eligible to be reimbursed for patients on federal health insurance.
Federal training services are starting to become available online, Ridley said, which makes it easier to train employees. Before, he said employees had to travel to the mainland for training. That meant less time spent inspecting health facilities.
Twelve surveyors are employed by OHCA. Just three or four have received the “highly specialized” training necessary to inspect dialysis centers, said OHCA chief Keith Ridley. A team of two surveyors usually spends four or five days inspecting new dialysis centers, he said.
State surveyors must follow a priority system for inspecting health care facilities. Higher priority inspections include complaint investigations and facilities that haven’t been inspected in a few years. Dialysis centers awaiting a recertification inspection can continue serving patients in the meantime.
Priorities are reset every year, meaning lower priority inspections aren’t always completed and may drop back to the bottom of the list. The state failed to review a single dialysis center in 2014 and 2015.
Rep. John Mizuno, chair of the Committee on Health and Human Services, introduced House Bill 1895 this year. It would fund three more full-time health department positions: two surveyors and one supervisor. All three employees could inspect health facilities, but training for these jobs can take two or three years.
“If this bill were to pass and we hired the three permanent staff … that still would not provide adequate coverage for 2019,” Mizuno said.
The health department and the governor’s office are working to fund contractual hires of already trained people from other states to help perform inspections in the coming months, Mizuno said. It helps that the federal government covers 80 percent of the cost because state health departments perform inspections on their behalf, Mizuno said.
The bill now faces a vote before the full House.
Meanwhile, Silva, the Mililani school counselor, said she’ll have to work later hours next year to accommodate her new dialysis schedule. She’ll start her treatments at 6:30 a.m., three days per week.
“I’m worried that I won’t be able to give my students the kind of effort and time that I would normally give them because I have to leave earlier just to get to (treatment in) Waipahu,” she said. “Just to see the (Mililani) facility kind of sitting there … I just don’t get why they didn’t open it yet when there’s so much need for facilities on the island and even the state.”