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

Marilyn Steele held onto her life but may lose her home because of lifesaving surgery her Fredericton doctor said couldn't be done in these parts. 

Steele got the surgery within days of a devastating cancer diagnosis, but not in Fredericton or anywhere else in Canada. The operation was performed in Florida, and New Brunswick Medicare refuses to pay for it. 

Steele's 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, fast-moving cancer that would kill her in months.

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

Family may lose home after learning Medicare won't cover lifesaving surgery 1:24

"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, 73, said she asked the doctor, "What about me?"

"You'll bleed to death," he said.

Steele had anaplastic thyroid cancer, a rare, fast-moving cancer that would kill her in months. (Submitted)

And that's when Steele's daughter, Lesley, began asking questions.

Lesley Steele had listened with horror as Belyea explained the diagnosis. Steele's tumour was wrapped round the base of her carotid artery, which supplies blood to the brain, neck and face.

Belyea, an ear nose and throat specialist and a head and neck surgeon, said he showed her mother's CT scan to other doctors. 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 alternative was perhaps three to 12 more months of life, depending on whether she chose what would be palliative treatment. 

Dr. Gary Clayman and Steele after her surgery in Tampa, Fla. (Submitted)

48-hour deadline

Belyea hadn't suggested where the Steeles should look for care.

But Lesley, a veterinarian, 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 tried those in the U.S.

By the next morning, she had received a call back from Dr. Gary Clayman, a thyroid cancer surgeon in Tampa, Fla. He would see her mother but it had to be soon. 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," Lesley said.

A letter saying travel is never covered under Medicare unless all domestic options are exhausted. (CBC)

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. The followup was 40 rounds of targeted radiation in Toronto, then daily chemo pills for life.

The surgery bills totalled close to $ 144,000.

And midway through radiation treatments in Toronto, Lesley Steele heard that Medicare would not pay for any of her medical care in the U.S. 

Prior approval

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

Belyea noted that Gary Clayman was one of the world's leading surgeons for that complicated surgery.

The medical consultant to 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, Dr. Zeljko Bolesnikov said.

After surgery, Steele needed 40 rounds of targeted radiation in Toronto and will have to take daily chemo pills for life. (Submitted)

In a second letter to 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 in Toronto, one in London, Ont., and one in Edmonton, could have done the surgery. He also said all other provinces agreed they wouldn't have approved a referral outside Canada. 

From the Steeles' perspective, 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."

Medicare is helping the family out with a monthly payment toward the Toronto stay. A GoFundMe campaign has raised more than $ 16,000 to help the family out.

Who pays?

Are the Steeles responsible for the out-of-country bills because their doctor didn't get pre-approval from 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.

The Steeles may have to sell their home in the country to pay for Marilyn's lifesaving surgery. (Catherine Harrop/CBC)

"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.

The 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.

Dr. Ed Schollenberg said normally a wait of a few days or a week doesn't matter and allows time for pre-approval from Medicare.

Schollenberg said Medicare 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 Medicare decisions, but generally they involved coverage for expensive drugs.

Patient's health 'the priority'

Health Minister Ted Flemming would not be interviewed 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." 

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