A Nova Scotia woman recovering from a lung transplant says she had to take tens of thousands of dollars from her retirement fund in order to undergo the life-saving procedure because provincial medical allowances fall far short of her expenses.
Nan Clarke, who is originally from Charlottetown but retired in the Halifax area, was diagnosed with idiopathic pulmonary fibrosis in 2019. That’s a thickening of the lungs that causes them to stiffen up.
“We were told there was a possibility of dying early on. That was hard to take,” Clarke, 73, said in an interview.
Clarke’s only chance of survival was a transplant, but that meant temporarily moving to Toronto.
Lungs are the only organ that can’t be transplanted on the East Coast. Patients undergo their initial treatment and tests in Halifax, but must move and live within two hours of the University Health Network while they are on the transplant list and during a recovery period. Patients have no idea how long they’ll be there.
“You’re not just coming up for a few months,” said Clarke, who relocated to Toronto in July 2024 with her husband.
Every month she waited for surgery, Clarke received $2,500 from the Nova Scotia government to cover her accommodations. This month, that amount increased by $500.
But Clarke said that amount is completely out of touch with the reality of her situation. She said furnished, clean, month-to-month apartments are impossible to find on that budget. They ended up paying $5,970 a month in rent, using their savings to make up the difference.
“We were panicking and I wanted my lung transplant,” she said. “So we’re into $40,000 easy out of our retirement savings.”
Life-changing decisions
Six years ago, some patients on the East Coast were choosing palliative care instead of lung transplants because they didn’t want to risk bankrupting their families.
After CBC News reported on the issue, several provinces boosted funding.
Clarke believes with inflation, patients will end up choosing palliative care once again. She knows of another Nova Scotia family in Toronto that is in the process of selling their home to cover the costs of a transplant.
Her husband, Dave Clarke, said the financial situation forced on patients is unacceptable.
“It’s not reasonable in my mind that the Nova Scotia government treats individuals who have to leave the province for care as a second-class citizen,” he said.
Their concerns aren’t limited to Nova Scotia. Prince Edward Island offers the lowest amount in the region, with those patients receiving $2,500 a month.
Health PEI confirmed to CBC News that its program is under review, but wouldn’t give a timeline for when funding might change.
Robert Macdonald of the Lung Association of Nova Scotia and Prince Edward Island has long advocated for more financial supports for those who have no choice but to move.
He said between 12 and 20 Nova Scotians go to Toronto for lung transplants every year, and fewer than five people go from P.E.I.
“We don’t want to be in a spot where we hit the postal code lottery, as they say. We want access to health care across the board no matter where you live,” he said.
Macdonald is applauding the Nova Scotia government for increasing the allowance, but said patients still have concerns.
“Families do have to make some tough decisions at times and that tugs at your heartstrings.”
Nova Scotia Health Minister Michelle Thompson declined an interview with CBC News. In a statement, the department acknowledged that lung transplant patients face financial challenges, which is why it increased the allowance a few weeks ago.
When asked why the province doesn’t match New Brunswick, which offers $4,000 a month, the department said there are differences between programs. It pointed out that Nova Scotia pays for travel for the patient and caregiver, while New Brunswick does not.
The statement also said some provinces don’t have medical accommodation allowances at all.
That answer is not good enough for the Clarkes.
Nan Clarke had her transplant in December, and now that she’s well on the road to recovery, the couple plans to advocate for others.
They’ve been writing letters to politicians that have gone unanswered.
Dave Clarke said he will be tallying up their accommodation expenses and sending the bill to Premier Tim Houston.
He said the province is sending a clear message to the unfortunate few who need lung transplants: “Be prepared financially to make a big commitment. Otherwise stay home and die from the disease.”
