Two charities that help organ transplant patients in Edmonton and Toronto say it’s time that provincial governments rethink the way they offer housing support for patients who must temporarily move to access treatment.
Their comments come after some Nova Scotia lung transplant patients started campaigning for more funding, saying people are selling their homes in order to get life-saving health care.
It’s a story Silvio Dobri has heard over and over again. He had a heart transplant nearly 30 years ago and has dedicated his life to paying it forward ever since.
Dobri founded the GoodHearts Transplant Foundation in Edmonton, which now offers eight apartments near the University of Alberta Hospital at a subsidized rate to transplant patients.
The patients pay $40 a day for the furnished apartment, don’t have to pay a deposit and don’t have to give any notice when they’re leaving.
“For me, it’s really important that we keep this up for as long as we can,” Dobri said.
Dobri still gets emotional talking about his experience. A donor heart became available just one day after he was placed on the transplant list.
“I was really grateful to get a heart that quickly.”
As he recovered at the University of Alberta Hospital, he met other patients who were facing another stress — paying for their accommodations. Anyone who needs an organ must stay near a major hospital while they receive their life-saving care, with that care often stretching on for months.
Jackie Foord, the current CEO of GoodHearts, says patients across Canada are struggling to find apartments near hospitals in the midst of a national housing crisis, putting extra stress on patients in critical situations.
“Travelling in Canada for what I would call specialized health care is a real issue for so many people,” Foord said. “It is a tremendous burden.”
In Nova Scotia, lung transplant families have started speaking out about that financial burden. Transplant patients receive $3,000 a month from the province to cover their rent in Toronto, where they must live with a caregiver for months.
Verbena Brenton-Goguen said expenses were so high while her late husband received his transplant that she now has to sell their family home in Springhill, N.S.
Nan and Dave Clarke told CBC the cheapest furnished apartment they could find while they were in Toronto for her double lung transplant cost $5,900 a month.
That doesn’t surprise Sass Khazzam at all.
He runs StayWell Toronto, a charity that negotiates with hotels and apartment companies near the hospitals in Toronto to provide patients with affordable accommodations.
Khazzam said $3,000 a month won’t cover the cost of a one-bedroom furnished apartment, even with the charity’s rates.
He said patients don’t have any choice about the timing of their visit and sometimes show up during peak tourist seasons, when costs are even more prohibitive.
“When we had, for example, Taylor Swift here, accommodation rates went up to $2,000 a night. Next summer we have FIFA [soccer] coming, and we’ll have the same problem.”
Khazzam said StayWell does its best to further subsidize rooms in those situations to try to make stays affordable.
He said most of the families the organization assists are from Ontario, but this year, more than 10 per cent of them have been from Atlantic Canada.
Khazzam said the charity sometimes has to turn people away because even with their connections, they can’t find appropriate available spots. Right now, for example, they have no monthly availability until August, he said.
“I appreciate that governments can only do so much, but there’s always room for more,” he said. “People need help. We do the best we can.”
Each province and territory has its own approach to living expenses for transplant patients.
Some, including Alberta, don’t offer anything to patients who have to move away for treatment.
New Brunswick just increased its monthly allowance to $4,000.
Michelle Thompson, Nova Scotia’s health minister, told CBC in June that her department has numerous requests for financial help with health care, and the money can only go so far.
Foord said the disparity is unfair.
“It might be time for governments to talk about access to rural and remote communities because everyone deserves health care,” she said. “Not being able to access it is so devastating for so many people.”