Woman may lose home after learning New Brunswick Medicare won't cover Florida cancer surgery

Marilyn Steele says she has her life backbut she and her husband may lose theirhomeafter she underwent cancer surgery in Florida at the family's own cost because her doctor told them he andhis colleagues agreed the procedure couldn't be done in New Brunswick or Nova Scotia.

Steele, 73, a resident of Nashwaak Bridge, about an hour outside Fredericton, had surgeryin Tampa within days of her diagnosis in December. Shenow has $144,000 in surgery bills that the province of New Brunswick refuses to pay.

Her roller-coaster ride of pain and panic began on Dec. 7, when Dr. James Belyea gave her the news she had anaplastic thyroid cancer a rare cancer that he said would kill her in months.

Steele said Belyea told her and her family there was nothing he could do for her, and then painted a terrifying picture of what she could expect at the end.

Fredericton woman prepares to sell her home to pay for cancer treatment

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Family may lose home after learning Medicare won't cover lifesaving surgery

"The tests were showing that the tumours were invading my carotid artery," Steele said from Toronto, where she's just finished 40 rounds of radiation treatment.

"And he said the very last thing would be that that artery would rupture. And it would be very gruesome for my family to watch."

Steele said she asked the doctor, "'What about me?'" and that he responded:"'You'll bleed to death.'"

That's when Steele's daughterLesleybegan asking questions as Belyea explained the horrifying diagnosis.

Steele's tumour was wrapped around the base of her carotid artery, which supplies blood to the brain, neck and face. Lesley saidBelyea, an ear nose and throat specialist, and head and neck surgeon, told themhe showed her mother's CT scan to other doctors but no one in New Brunswick or Nova Scotia could help.

"He just said, 'I would highly, highly encourage you to seek care elsewhere,'" Lesley said.

The only other option offered to her was radiation and chemotherapy, which may have extended her life three to 12 months.

48-hour deadline

Lesley said Belyea hadn't suggested where the Steeles should look for care. Being a veterinarian, sheimmediately started calling her own medical contacts and searching for anyone who might save her mother's life. Hersearch turned up surgeons in the U.S. and Europe, so she turned to onesin the U.S.

By the next morning, Lesley said, she had received a call back from Dr. Gary Clayman, a thyroid cancer surgeon in Tampa, who said he would see her mother,but it had to be soon, as the cells with her type of cancer divide rapidly.

"We had from 8:30 in the morning Saturday morning until Monday morning at 8 a.m. so 48 hours we had to get to Tampa," she said.

At the clinic in Florida, the Steeles pooled their credit cards, hoping their limits would cover thecosts.

By Wednesday, Steele had undergone a successful seven-hour surgery, followed by40 rounds of targeted radiation in Toronto, then daily chemotherapy pills for life.

Midway through radiation treatments in Toronto, Lesley heard thatNew Brunswick Medicare would not pay for any of her care in the U.S.

Prior approval

On Dec. 10, before Steele underwent surgery, Belyea had written a letter of support to New Brunswick Medicarefor the family's choice to head to Florida. The letter saidSteele "was not considered a surgical candidate in New Brunswick or Nova Scotia," mainly because the surgery was too complicated.

Belyea noted Clayman was one of the world's leading surgeons for thecomplicated surgery.

However, Dr.ZeljkoBolesnikov, the medical consultant to New Brunswick Medicare, read Belyea's letter on Jan. 3 and wrote back that out-of-country services are only covered if there is proof no Canadian centres could perform them.

In Steele's case, there wasn't any proof Belyea had tried tofind out if other hospitals in Canada could do the procedure, Bolesnikovwrote.

In a second letter to New Brunswick Medicare, Belyea said he was unaware of any legislation thatrequired him to call every centre in Canada to see if a surgeon could do the work.

"In the time it would've taken for Marilyn Steele to be assessed at every academic centre in Canada, she would have almost certainly died of airway obstruction or had distant metastasis," he wrote.

Bolesnikov replied that threehospitals one each in Toronto, London, Ont., and Edmontoncould have done the surgery. He also said all other provinces agreed they wouldn'thave approved a referral outside Canada.

From the Steele family's perspective, New Brunswick Medicare's refusal to cover the surgery appears to be punishing the patient for a doctor's failure to know or communicate Medicare rules. The family has appealed the decision.

"I'm very frustrated at what appears to be a technicality between someone claiming to not knowthe process and someone claiming that the process has to be followed in order for something to happen," said Lesley.

"Those two sides don't involve my mother at all."

Marilyn is receiving a monthly payment from New Brunswick Medicare for her medical stayin Toronto, and aGoFundMe campaign has raised more than $16,000 for the family.

Who pays?

The questions remains whether the Steelesare responsible for the out-of-country bills because their doctor didn't get pre-approval from New Brunswick Medicare.

Bolesnikov said it shouldn't have been left to the Steele family to check out other possibilities for surgery. Doctors, he said, are trained to check multiple centres of excellence.

"You can't be a surgeon without knowing who does what in your field," he said in an interview.

In one of his letters to Belyea,Bolesnikovalso said families should be made aware that "going outside the country will be their own responsibility."

Belyea did not return calls from the CBC.

Dr.EdSchollenberg, registrar of theNew BrunswickCollege of Physicians and Surgeons, said he hasn't seen a casequite like this one, where the cancer is extremely fast moving.

He said normally a wait of a few days or a week doesn't matter and allows time for pre-approval from New Brunswick Medicare.Schollenbergalso said ithas lists of doctors and their specialties, and cangenerally do the checking for the doctor.

He said theDepartment of Health has intervened to overrule some provincialMedicare decisions, but generally they involved coverage for expensive drugs.

Patient's health 'the priority'

New Brunswick Health Minister Ted Flemmingdid not agree to an interview, and said in an email he can't talk about specific cases.

"I can tell you that there is a formal process in place for out-of-country Medicare coverage which we are in the process of going through now. The health of any patient is always the priority."

Marilyn Steele speaks just above a whisper because of hersurgery and radiation.

"We're not rich people," she said."We're both retired ona small pension. And the only asset that we have is our home. And it's a very modest three-bedroom bungalow in the country."

Despite fears she will soon have to sell thehouse to cover her medical costs and perhaps move into an apartment, Steele smiled at thethought of returning to New Brunswick.

"Oh,just[to] look out my front window at the snowbanks. I just want to be home."