Former Fox Valley Hematology & Oncology cancer patients find unexpected complications with their move to ThedaCare

Feb. 20--APPLETON -- Now they have to deal with this.

Besides coping with illness, some cancer patients who moved from Fox Valley Hematology & Oncology to ThedaCare in mid-2018 have had to deal with 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 man emailing USA 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 said their complaints to administrators fell on deaf ears. At least two of those who responded have since left for 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 about six months, starting at the time ThedaCare bought out rival FVHO.

A ThedaCare spokeswoman disputed 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 the complaints. "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 a letter 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 bought FVHO to bring cancer care in the Fox Valley to a higher level, said Dr. Timothy Goggins, one of five physician owners who sold the independent clinic to ThedaCare.

But founder Dr. William Guenther, who was no longer with FVHO at the time of the sale, warned that the merger would make care more expensive.

"The biggest loss for the community is that the cost of care is going to increase," said Guenther, who now lives in North 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.

Archive: ThedaCare agrees to acquire Fox Valley Hematology & Oncology by June 4

Archive: FVHO closes building, operations transferred to ThedaCare; 46 jobs lost

Some patients, meanwhile, took it hard. They took to social media to express sadness.

"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 posts on Facebook showed patients missed FVHO'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 a decorative 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 the computer about the adjustments that had been made on the chemotherapy 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, the doctor filling in for her regular doctor, who was on vacation, looked for the notes.

"He told me, 'Don't shoot the messenger,'" she said. "He was looking for notes on lowering the dose and they weren't there. I had seen my regular doctor type them into the computer on the second visit in July, and he said he wanted to make sure I didn't get the high dosage again."

In January, Hatton requested her medical records from ThedaCare, which she shared with USA TODAY NETWORK-Wisconsin. Though Hatton said she saw her doctor enter the information, the records do not show a lower 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 the transition and the months that followed.

"Throughout the transition, physicians and staff 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 continued to have regular correct treatments at ThedaCare.

But she was careful 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 ThedaCare computer system were also missing, and her appointment times had been changed without notice.

She had labs, a doctor visit and chemo scheduled on one day, for example. When she saw her doctor, 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 Wallace said combining processes and systems meant some patients' 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," Wallace said.

Hatton said she was never notified.

In frustration, she left voicemails for two center administrators, warning that mistakes were being made. She said they did not return the calls.

"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 that no one contacted her. She asked for copies of correspondence to verify ThedaCare's claim. An employee in records told her ThedaCare did not keep copies of letters sent to patients, she said.

Hatton said her experience made her concerned about other patients she saw sitting 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 transferring from 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, was one of the patients who had insurance issues following ThedaCare's acquisition of FVHO. He spoke for this story before dying Feb. 3.

He had Network Health insurance through his employer. Network had been accepted at FVHO and was grandfathered into the ThedaCare Regional Cancer Center through the end of 2018.

Network is also accepted by the Ascension system -- a local rival system to ThedaCare -- and hospitals like St. Elizabeth and Froedtert.

The larger issue, Garrow said, was this year.

ThedaCare's cancer center no longer accepted Network 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 meant he was forced 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 had his first appointment there in December.

ThedaCare's Wallace confirmed that ThedaCare does not have an in-network agreement with Network Health for 2019, though it does accept Network 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 in for periodic maintenance treatments with a drug called Rituxan, which is administered intravenously for several hours in a clinical setting.

He continued to receive the same treatment after the switch to ThedaCare.

The part that changed, however, was the price tag.

Under FVHO, his treatment 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 was billed the "out-of-pocket" portion, which is what he has to pay per treatment.

Under FVHO, his out-of-pocket costs in 2017 and 2018 ranged from $271.49 to $285.26 per treatment, he said. "It was always under $300."

ThedaCare's bill for his June 26 treatment tripled to $908.24.

Gauerke provided copies of his bills to verify those amounts.

ThedaCare later sent him a survey asking how they were doing, and he replied negatively.

"I got a generic letter back thanking me and saying they were making improvements," he said.

The letter, dated Sept. 18, apologized for "any inconvenience you or your loved ones may have recently experienced with your cancer care." It was signed by Imran Andrabi, president and CEO of ThedaCare.

Gauerke then wrote directly to Andrabi on 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 asked that Andrabi or someone in billing get back to him. He got no 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's Wallace was asked about the matter.

"Yes, this patient received our response. In the spirit of patient privacy as required by law, we are unable to share details of his care or billing," she said.

Gauerke followed up by calling Andrabi's office twice, on Jan. 8 and 9, and each time requested a copy of the response he was supposed to have gotten.

"I was promised each time by an assistant that I'd get 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 surprise Dr. William Guenther, FVHO's founder who'd left before ThedaCare bought FVHO.

Guenther predicted in June that costs would rise. Another former FVHO patient wrote to him recently and quoted 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 out in a 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 were 28 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 than to 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 was less friendliness, longer waits, less privacy, and phones were answered 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 of what 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 [email protected]; on Twitter @wallenfang

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