Lung transplant patients want more help with high relocation costs
Josh Elliott, CTVNews.ca
Published Sunday, August 31, 2014 10:03PM EDT
Some Canadians who need a lung transplant say they aren't getting enough government support to cover the costs of living near a hospital where the surgery can be done.
Only five Canadian cities have hospitals that can perform a lung transplant, and transplant candidates must live within a two-hour drive of the hospital to be considered for surgery. That's forced some patients to spend thousands of dollars to temporarily move close enough to a hospital to be considered for a transplant. And most of the money they spend on rent is money they aren't getting back from their health plan.
Provinces will reimburse needy patients up to a certain point, but not for the full cost of relocation. Some patients have sunk tens of thousands of dollars into rent and transportation costs, waiting for a transplant that could be available in one week, one month or one year.
Reg Beaudette has idiopathic lung disease, and he just marked his 14th month on the transplant waiting list. He lives with his wife, Cathy, in downtown Toronto right now, but they're from Sault Ste. Marie, Ont., an eight-hour drive away.
"We have to be here," Cathy Beaudette told CTV News. "We don't choose to be here."
They say Ontario's $650 monthly relocation stipend helps with the rent, but it's not enough to cover their monthly expenses of $2,500. Another year of waiting will leave them with an empty bank account.
"If worse comes to worse, we will sell our home," she said.
Only Montreal, Toronto, Winnipeg, Edmonton and Vancouver have hospitals with the capacity to perform a lung transplant, and rent in those cities is generally much higher than in rural areas and small towns like Sault Ste. Marie.
And while rent is the largest expense, patients must also have a full-time, dedicated support person living with them throughout the waiting and rehabilitation time. If that support person is a spouse or family member, he or she will not be able to work at the same time, which further adds to the financial burden.
Earlier this month, the Beaudettes wrote an open letter to Eric Hoskins, Ontario's Minister of Health and Long-term Care, asking him to reconsider the province's funding practices for lung transplant candidates.
"Our request is that you try to address what seems to us like a very unfair situation of compensation to Ontario residents who are forced to relocate for life-saving surgery," the letter says. It also compares Ontario to other provinces, where patients get back as much as 80 per cent of their costs.
And the Beaudettes are not alone in their financial struggles.
Gary Duke, also of Sault Ste. Marie, has been through that process, and he's still feeling the financial strain. He and his wife, Sherri, spent six months renting a place in Toronto while they waited for a transplant.
When Gary Duke's surgery finally happened, he had to stay in Toronto another three months for the rehabilitation process.
The couple says they were spending $2,500 a month on rent and getting just $650 back from their Ontario health plan. Now they're more than $10,000 in debt, with bills piling up.
"I worry about those every night," Gary Duke told CTV News. "I get Canada pension, and that's it."
Gary Duke suffered from severe emphysema for six years, and used to carry around an oxygen tank to help with his breathing. Now, the lung transplant has brought him health – and financial hardship.
"We do what we have to do, but it's just not fair that a family has to go through this financial struggle," Sherri Duke said.
"These people need life-saving organs," said James Breckenridge, president and CEO of the Canadian Transplant Society. "I feel this is part of the operation. This is something that should be covered by the provincial healthcare system."
With a report by CTV's Medical Specialist Avis Favaro and producer Elizabeth St. Philip