N.S. lung recipient says costs around transplant hammered retirement savings

Nan Clarke, a Nova Scotia woman recovering from a lung transplant, recently shared her story about the financial struggles she faced in order to undergo the life-saving procedure. Clarke, originally from Charlottetown but retired in the Halifax area, was diagnosed with idiopathic pulmonary fibrosis in 2019. This condition causes the lungs to thicken and stiffen, making it difficult to breathe.

The only chance for Clarke’s survival was a lung transplant, but this meant temporarily moving to Toronto. Unfortunately, lungs are the only organ that cannot be transplanted on the East Coast, so patients must relocate to be within two hours of the University Health Network while on the transplant list and during the recovery period. This uncertainty meant that Clarke and her husband had to move to Toronto in July 2024.

While waiting for her surgery, Clarke received a monthly allowance of $2,500 from the Nova Scotia government to cover accommodation costs. However, this amount was insufficient to cover the high cost of living in Toronto. The couple ended up paying $5,970 a month in rent, depleting their retirement savings by $40,000.

This financial burden is not unique to Clarke, as some patients on the East Coast have opted for palliative care instead of lung transplants due to the high costs involved. After media attention on the issue, several provinces, including Nova Scotia, increased funding. However, Clarke believes that with inflation, patients may once again face financial barriers to receiving life-saving transplants.

Robert Macdonald of the Lung Association of Nova Scotia and Prince Edward Island has been advocating for more financial support for patients who have to relocate for medical treatment. While the Nova Scotia government recently increased the accommodation allowance, concerns remain about the financial strain on patients and their families.

Health PEI confirmed that its program is under review, but there is no timeline for changes to funding. Despite the challenges, Clarke and her husband plan to advocate for improved financial support for transplant patients. They have been reaching out to politicians and plan to send a bill for their accommodation expenses to Premier Tim Houston.

The Clarkes believe that the current financial support is inadequate and sends a message to patients in need of lung transplants that they must be financially prepared for the commitment. They hope that their advocacy efforts will bring about positive change for future patients facing similar challenges.