A woman with a new Scotland who recovered from a lung transplant says she had to take tens of thousands of dollars from her retirement fund to submit to the vital salvation procedure because the provincial medical assignments do not have the expenses of their expenses.
Nan Clarke, who is originally from Charlottetown but retired in the Halifax area, was diagnosed with idiopathic pulmonary fibrosis in 2019. That is a thickening of the lungs that makes them harden.
“They told us that there was the possibility of dying from the beginning. That was difficult to take,” said Clarke, 73, in an interview.
Clarke’s only possibility of survival was a transplant, but that meant temporarily moving to Toronto.
The lungs are the only organ that cannot 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 will be there.
“Not only do you come for a few months,” said Clarke, who moved to Toronto in July 2024 with her husband.
Every month surgery expected, Clarke received $ 2,500 from the Government of Nueva Scotia to cover his accommodations. This month, that amount increased by $ 500.
But Clarke said the amount is completely out of contact with the reality of his situation. He said that furnished, clean and monthly apartments are impossible to find in that budget. They ended up paying $ 5,970 per month for rent, using their savings to compensate for the difference.
“We were panic and wanted my lung transplant,” he said. “So we are at $ 40,000 easy for our retirement savings.”
Decisions that change life
Six years ago, some patients on the east coast were choosing palliative care instead of lung transplants because they did not want to risk their families.
After CBC News reported on the subject, several provinces increased the funds.
Clarke believes that with inflation, patients will end up choosing palliative care once again. She knows another family of New Scotland in Toronto who is in the process of selling her home to cover the costs of a transplant.
Her husband, Dave Clarke, said that the forced financial situation is unacceptable.
“It is not reasonable in my opinion that the New Scotland government treats people who have to leave the province to receive attention as a second -class citizen,” he said.
His concerns are not limited to New Scotland. Prince Eduardo island offers the lowest amount in the region, and those patients receive $ 2,500 per month.
Health Pei confirmed to CBC News that his program is under review, but would not give a timeline for when he could change the financing.
Robert Macdonald of the Association Lungs of Nueva Scotia and Prince Eduardo’s island has advised for a long time to obtain more financial support for those who have no choice but to move.
He said that between 12 and 20 rookie scotians go to Toronto for lung transplants every year, and less than five people go from Pei
“We do not want to be in a place where we arrive at the Lottery of the Postal Code, as they say. We want access to medical care in all areas no matter where you live,” he said.
Macdonald is applauding the New Scotland government for increasing the allocation, but said that patients still have concern.
“Families have to make some difficult decisions sometimes and that pulls their hearts.”
New Scotland Minister of Health, Michelle Thompson, rejected an interview with CBC News. In a statement, the department acknowledged that patients with lung transplantation face financial challenges, so the allocation increased a few weeks ago.
When asked why the province does not match New Brunswick, which offers $ 4,000 per month, the department said there are differences between the programs. He pointed out that New Scotland pays trips for the patient and the caregiver, while New Brunswick no.
The statement also said that some provinces do not have medical accommodation subsidies at all.
That answer is not good enough for the Clarkes.
Nan Clarke had its transplant in December, and now that it is fine on the road to recovery, the couple plans to advocate for others.
They have been writing letters to politicians who have not been an answer.
Dave Clarke said he will have his accommodation expenses and send the bill to Prime Minister Tim Houston.
He said that the province is sending a clear message to the unfortunate few who need lung transplants: “be financially prepared to make a great commitment. Otherwise, stay at home and die from the disease.”
