APPLETON - Now they have to deal with this.
Besides coping withillness, some cancer patients who moved from Fox Valley Hematology & Oncology to ThedaCare in mid-2018 have hadto dealwith unexpected complications ranging from an incorrect medication and higher costs to rejected insurance.
“It’s bad. It’s really bad,"said patient Linda Hatton."I'm horrified at the mistakes being made.”
Stories from patients started with one manemailingUSA TODAY NETWORK-Wisconsin to talk about his experience.
A subsequent post on The Post-Crescent’s Facebook page invited other former FVHO patients to share their experiences.
About a dozen responded. None praised the changeover, though none faulted doctors or nurses. Several saidtheir complaints to administrators fell on deaf ears.At least twoof those who respondedhave since leftfor other health care systems.
“It’s an absolute disaster,” said patient Chip Garrow, a patient who participated in this story before he died Feb. 3.“You don’t want to deal with that when you’re dealing with your health. You’ve got enough on your plate."
Reports from patients cover a period of aboutsix months, starting atthe time ThedaCare bought out rival FVHO.
A ThedaCare spokeswomandisputed claims that the provider did not respond to patients' complaints, but declined to go into specifics because of federal health care privacy rules, commonly known as HIPAA.
"ThedaCare is committed to providing quality care and a positive experience for all patients who entrust us with their health and care," ThedaCare spokeswoman Cassandra Wallace wrote in response to a USA TODAY NETWORK-Wisconsin email detailing thecomplaints."We want to respect patients, respect their families and respect HIPAA regulations."
USA TODAY NETWORK-Wisconsin reached out to a number of ThedaCare employees for this story. All requests were forwarded to Wallace.
One patient provided aletter he received, in response to his concerns, that was signed by ThedaCare President and CEO Imran Andrabi.
"Bringing together the world-class minds from ThedaCare and Fox Valley Hematology & Oncology has resulted in an even stronger team and greater access to care in the communities we serve, however transitions can be tricky at times and we recognize there are areas where we can improve," it read.
Six-month checkup
ThedaCare bought out rival FVHO for an undisclosed sum in June 2018 and moved its patients across Interstate 41 to the nearby ThedaCare Regional Cancer Center at 2500 E. Capitol Drive.
ThedaCare shut down FVHO’s building in Appleton —a $23 million, three-year-old medical facility at 3925 N. Gateway Drive— and merged the two clinics. It hired about 100 of FVHO's staff of 146.
ThedaCare boughtFVHOto bring cancer care in the Fox Valley to a higher level, said Dr. Timothy Goggins, one of five physician owners who sold the independent clinicto ThedaCare.
But founderDr. William Guenther, who was no longer with FVHO at the time of the sale, warned that the mergerwould make caremore expensive.
“The biggest loss for the community is that the cost of care is going to increase,"said Guenther, who now lives inNorth Carolina. "Hospital systems are paid a substantially higher amount for services. We were the low-cost care provider in the community.”
The cost difference is not on its face unusual: Medicare pays hospital systems more for the same treatment than standalone clinics.
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Archive:FVHO closes building, operations transferred to ThedaCare; 46 jobs lost
Some patients, meanwhile, took it hard. Theytook to social media toexpresssadness.
“At a time when compassion and care are needed in large doses, I felt like a refugee being herded across the highway and not understanding why,” wrote Terry Talbot of Appleton on The Post-Crescent's Facebook page.
“I will always miss FVHO.”
Other postson Facebook showed patientsmissedFVHO's facilities and the friendliness they say they were accustomed to there. Some were angry they had to move.
But more serious concerns came from other patients.Several said they were sharing their experiences in the hope it might force improvements.
'Not comfortable staying there'
After a stem cell transplant at Froedtert & the Medical College of Wisconsin in Milwaukee for multiple myeloma, Linda Hatton was put on maintenance medications that would be monitored locally. She's adecorative artist from Little Chute who was moved from FVHO to ThedaCare in June.
Following bad side effects from a chemotherapy treatment in July, Hatton said her doctor ordered a lower dose of the medicine.
After getting violently ill after her next visit on Aug. 13, she alerted ThedaCare of her reaction and asked them to find the notes in thecomputer about the adjustments that had been made on thechemotherapy at the prior visit. They couldn't find them.
“The computer changed the amount of chemo back to the larger amount from before," Hatton said. "I was given the wrong amount."
At a follow-up appointment, thedoctor filling infor her regular doctor, who was on vacation, looked for the notes.
"He told me, 'Don't shoot the messenger,'" she said. "Hewas looking for notes on lowering the dose and they weren’t there. I had seen myregulardoctortype them into the computer on the second visit inJuly, and he said he wanted to make sure I didn't get the high dosage again."
In January, Hattonrequested her medical records from ThedaCare, which she shared withUSA TODAY NETWORK-Wisconsin.Though Hatton said she saw her doctor enter the information, the records do not show alower dosage entered on the chart in July. The records do show a lower dosage entered for her treatment on Aug. 27.
ThedaCare would not make any employees available for interviews for this story. Spokeswoman Wallace said she could not address a specific patient's claim because of privacy laws, but said the computer system and patient records were handled carefully in thetransition and the months that followed.
"Throughout the transition, physicians andstaff have had access to all the information needed to ensure safe, quality care including patient records. A process was put in place to carefully reconcile and confirm every treatment plan," she wrote. "Chemotherapy was an area that was attended with the utmost attention with at least three quality checkpoints to confirm patient plans and dosing was accurate."
Hatton said she recovered from the incorrect higher dosage and for the next few months continuedto have regular correcttreatmentsat ThedaCare.
But she wascareful to ask lots of questions. Even about such basic things as what they're giving her in an IV.
Hatton said other notes in the ThedaCarecomputer system were also missing, and her appointment times had beenchanged without notice.
She hadlabs, a doctor visit and chemo scheduled on one day, for example. When she saw herdoctor, he asked why she'd changed her chemo appointment.
"I said I didn't. The computer records showed it had been changed to the next day. I had never been informed of any changes," she said.
ThedaCare spokeswoman Wallacesaid combining processes and systemsmeant somepatients' appointment times were adjusted.
"Letters and emails were sent to communicate new appointment times. ThedaCare also contacted patients directly to schedule times that worked for the patient, provider and staff," Wallacesaid.
Hatton said she was never notified.
In frustration, she left voicemails for twocenter administrators, warning that mistakes were being made. She said they did not return thecalls.
"ThedaCare has a process to address patient inquiries, which includes a leader or our patient experience director contacting the patient to understand the issue and address it as effectively and efficiently as possible," ThedaCare's Wallace said in an email. "This process was in place during the recent cancer care transition."
Hatton stands by her claim thatno one contacted her. Sheasked for copies of correspondence to verify ThedaCare's claim. An employee inrecords told herThedaCare did not keepcopies ofletters sent to patients, she said.
Hatton said her experiencemadeherconcerned about other patients she sawsitting in the waiting room.
“I’m sure I’m not the only one this has happened to. It’s no fault of the good doctors and nurses there. My doctor was baffled. He just shook his head and said, ‘I don’t believe this.’”
In January, Hatton started the process of transferringfrom ThedaCare to another cancer clinic run by a different health system.
"For my own health reasons, I'm not comfortable staying there," she said.
Insurance woes
Chip Garrow, a Hortonville resident, wasone of the patients who hadinsurance issues following ThedaCare's acquisition ofFVHO. He spoke for this story before dying Feb. 3.
He hadNetwork Health insurance through his employer. Network had been accepted at FVHO and wasgrandfathered into theThedaCare Regional Cancer Center through the end of 2018.
Network is also accepted bythe Ascension system —a local rival system to ThedaCare — and hospitals like St. Elizabeth and Froedtert.
The larger issue, Garrowsaid, wasthis year.
ThedaCare's cancer centerno longer acceptedNetwork insurance as of Jan. 1.
“I tried to find one insurance (offered by his employer) that covered all of my doctors, and none of them would,” he said in December. “I stuck with Network because it was the cheapest one and I haven’t had any issues with them.”
But it meanthe wasforced to leave the local cancer doctors he’s been seeing for years.
“I love them to death,” he said. “It sucks. They know you as a person. You’re not just a medical record. They know what I do for a living and how I live my life. You get a new guy and they’ve got to learn all that stuff.”
His Froedtert doctors recommended several local doctors at Ascension. Garrow hadhis first appointment there in December.
ThedaCare'sWallace confirmed that ThedaCare does not have an in-network agreement with Network Health for 2019, though it does acceptNetwork Medicare Advantage plans "that offer same costs for in- and out-of-network providers."
Higher costs
Gene Gauerke is a retired Lutheran pastor in Waupaca who had been treated for leukemia for years.At 87, he says he feels good, and his condition is stable.
Gauerke received care for 20 years at FVHO, which had a Waupaca satellite clinic. He went infor periodicmaintenance treatments with a drug called Rituxan, which is administered intravenously for several hours in a clinical setting.
He continuedto receive the same treatment after the switch toThedaCare.
The part that changed, however, was the price tag.
Under FVHO, histreatment was$10,400. At ThedaCare, it more than doubled to $22,972.81.
“I thought it was outrageous,” he said.
“They billed me $22,972.81 and didn’t say what it was for. I called and asked, and they said it was for the Rituxan. The same drug. The same amount. Same procedure. But they more than doubled the cost,” he said.
After Medicare and his supplemental insurance took care of their portions, he wasbilled the “out-of-pocket” portion, which is what he has to pay pertreatment.
Under FVHO,his out-of-pocketcosts in2017 and2018 ranged from$271.49 to $285.26 per treatment, he said. "It was always under $300."
ThedaCare's bill forhis June 26 treatmenttripledto $908.24.
Gauerke provided copies of his billsto verify those amounts.
ThedaCare later sent him a survey asking how they were doing, andhe replied negatively.
“I got a generic letter back thanking me and saying they were making improvements,” he said.
Theletter, dated Sept. 18, apologized for "any inconvenience you or your loved onesmay have recently experienced with your cancer care." It wassigned by Imran Andrabi, president and CEO of ThedaCare.
Gauerke then wrotedirectly to Andrabion Sept 26.
“I realize, and respect the fact, that organizations like ThedaCare, a non-profit entity, have to make a profit to stay in business. However, doubling the rates for the same treatment causes me to question ThedaCare’s philosophy of putting patients first and being the heart of everything you do,” he wrote.
He askedthatAndrabi or someone in billing get back to him. Hegotno response.
“I sent it again, on Oct.28, with a personal note saying that I was patiently waiting for a reply,” Gauerke said.
He said he didn't receive a response.
ThedaCare'sWallace was asked about the matter.
"Yes, this patient received our response. In the spirit ofpatient privacy as required by law, we are unable to share details of his care or billing," she said.
Gauerke followed up by callingAndrabi's office twice, on Jan. 8 and 9, and each time requesteda copy of the response he was supposed to have gotten.
"Iwas promised each time by an assistant that I'dget a call back," he said.
As of this week, he was still waiting for a call back and had not gotten a copy of the response.
Gauerke's higher bills didn’t surpriseDr. William Guenther, FVHO’s founder who’d left before ThedaCare bought FVHO.
Guenther predicted in June that costs would rise.Anotherformer FVHO patient wrote to him recently andquoted higher bills similar to Gauerke's once he moved to ThedaCare.
“They’re allowed to charge more because they’re a hospital system,” said Guenther. “Medicare pays hospital systems more for the same treatment than they pay independent physicians. There are various reasons for that, but it is the reality.”
He said differences were first pointed outina 2013 study “Comparing Episode of Cancer Care Costs in Different Settings: An Actuarial Analysis of Patients Receiving Chemotherapy” done by Milliman and commissioned by Genentech.
It said treatment costs were28 to 53 percent higher, depending on the type and stage of cancers studied, when chemotherapy infusions were done in a hospital outpatient (HOP) setting.
“It is well-established that costs are higher for services delivered in a HOP setting compared to a physician office setting,” it summarized. “Facility-related payments to HOPs are a significant driver of this cost difference.”
Outside of Medicare, insurance companies are paid amounts negotiated in contracts, but they also typically pay more to hospitals thanto private practice physicians, Guenther said.
Loss of FVHO
Patients Hatton and Talbot both said the human side of the business is not the same at ThedaCare as it was at FVHO.
While that’s not a life-threatening matter, it makes going for treatment more stressful, they both said.
Hatton said from her experience there wasless friendliness, longer waits, less privacy, and phones wereanswered by a system rather than a human.
“The doctors and nurses are run ragged. I don’t think they were prepared for the number of people who came over from FVHO,” she said.
Talbot agreed.
"It wasn't an issue with the doctors and the nursing staff. It was a miss on the administration part of it," she said. "Had they taken the time over the course of the summer to put together more infusion rooms, or just do anything that said, 'We are expecting more people,' it would have been better."
She said cancer patients are overwhelmed by two feelings:the loss of control and fear ofwhat is ahead for themselves and their loved ones.
“The transition to ThedaCare in June,” she said, “addressed neither of these feelings.”
Maureen Wallenfang: 920-993-7116 or mwallenfang@postcrescent.com; on Twitter@wallenfang
