Marilyn Steele says she has her life back — but she and her husband may lose their home — after she underwent cancer surgery in Florida at the family's own cost because her doctor told them he and his 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 surgery in Tampa within days of her diagnosis in December. She now 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.
"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 daughter Lesley began 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 said Belyea, an ear nose and throat specialist, and head and neck surgeon, told them he 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.
Lesley said Belyea hadn't suggested where the Steeles should look for care. Being a veterinarian, she immediately started calling her own medical contacts and searching for anyone who might save her mother's life. Her search turned up surgeons in the U.S. and Europe, so she turned to ones in 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 the costs.
By Wednesday, Steele had undergone a successful seven-hour surgery, followed by 40 rounds of targeted radiation in Toronto, then daily chemotherapy pills for life.
Midway through radiation treatments in Toronto, Lesley heard that New Brunswick Medicare would not pay for any of her care in the U.S.
On Dec. 10, before Steele underwent surgery, Belyea had written a letter of support to New Brunswick Medicare for the family's choice to head to Florida. The letter said Steele "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 the complicated surgery.
However, Dr. Zeljko Bolesnikov, 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 to find out if other hospitals in Canada could do the procedure, Bolesnikov wrote.
In a second letter to New Brunswick Medicare, Belyea said he was unaware of any legislation that required 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 three hospitals — one each in Toronto, London, Ont., and Edmonton — could have done the surgery. He also said all other provinces agreed they wouldn't have 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 know the 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 stay in Toronto, and a GoFundMe campaign has raised more than $16,000 for the family.
The questions remains whether the Steeles are 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, Bolesnikov also 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. Ed Schollenberg, registrar of the New Brunswick College of Physicians and Surgeons, said he hasn't seen a case quite 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. Schollenberg also said it has lists of doctors and their specialties, and can generally do the checking for the doctor.
He said the Department of Health has intervened to overrule some provincial Medicare decisions, but generally they involved coverage for expensive drugs.
Patient's health 'the priority'
New Brunswick Health Minister Ted Flemming did 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 her surgery and radiation.
"We're not rich people," she said. "We're both retired on a 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 the house to cover her medical costs and perhaps move into an apartment, Steele smiled at the thought of returning to New Brunswick.
"Oh, just [to] look out my front window at the snowbanks. I just want to be home."