The wife of a lung transplant recipient who died in May says her family’s attempt to save her husband’s life has cost her their family home in Springhill, N.S.
Donald Goguen, a Canadian navy veteran, died in May of complications from two lung transplants last year.
Not only is Verbena Brenton-Goguen grieving her husband, but she’s grappling with the financial fallout of living in Toronto for 15 months while he received treatment.
“I can’t afford to live here,” she said of their house in Cumberland County. “I will be selling it. There’s no way that I’m going to retire at 60. Absolutely no way.”
Brenton-Goguen is one of three Nova Scotian families who have spoken to CBC News about the financial strain of accessing the life-saving surgery. While the procedure is covered by the province, all of their expenses are not.
The families are making a renewed plea to the provincial government to boost funding to cover their accommodations.
Health Minister Michelle Thompson says she sympathizes with the families, but says the health-care system is stretched in many directions and the department has to make tough choices.
Lungs are the only organ that can’t be transplanted in Halifax. Patients from the Atlantic region must go to Toronto once they’re placed on the transplant list, and must wait for months until a match is found.
Several provinces offer monthly allowances to help deal with the expenses, but the families say Nova Scotia’s program, which provides $3,000 a month, falls far short of the realities of living in Toronto for an undetermined length of time.
Donald Goguen received care for 15 months. During that time, his wife said, they sold their car and ATV and took out a loan. They were preparing to sell the house when he died.
“If there was any chance I could help save my husband’s life, I would’ve given everything but it is something now that I’m facing. So it’s not just the patient. It’s the family,” she said.
Brenton-Goguen said when she gave notice that she was leaving her Toronto apartment and going home, the province denied her allowance to help with the June rent because her husband — the patient — had died.
“It’s really a slap in the face, it truly is,” she said. “I do all the things a good person should try to do to support their province and, honestly, our province is not supporting us adequately by any means.”
Brenton-Goguen is now throwing her support behind Nan and Dave Clarke, from Head of St. Margarets Bay near Halifax, who sent the premier a bill for $34,981, the amount they had to pay out of pocket for their accommodations while waiting for Nan Clarke’s transplant in December. The claim was denied.
“I think it’s abhorrent,” said Nan Clarke. “I can’t believe that they do this to transplant patients or anybody that’s facing a medical problem that has to leave.”
The Clarkes argued they had no choice but to come up with the money, because Nan would have died without the transplant. While they were financially able to do so, they worry some people who don’t have the resources to afford such steep costs out of pocket will simply opt for palliative care.
The health minister said situations like this are the toughest part of her job. Thompson wouldn’t address the specific financial challenges the families say they are facing.
“There are infinite requests on finite resources, we know it’s difficult for families facing critical illness, I know that,” she said. “There are a number of programs that we offer and we continue in a publicly funded system to do the best we can to support patients who are accessing care both in the province and outside the province.”
Thompson said the point of the out-of-province allowance is to help with expenses, not cover them entirely.
“We’ll continue to review that program, to hear from people, we want to be responsive. But it isn’t a cost recovery program and we also want to maintain the integrity of the entire system, and I know that’s difficult.”
She said Nova Scotia is unique compared to other provinces because it covers some of the travel expenses of the support person who must go with the patient.
“We will continue to talk to families and hear from them directly, but again I reiterate it’s not cost recovery, it’s cost assistance.”
The Clarkes and Brenton-Goguen say they’d welcome the chance to sit down with the minister or other politicians to share their experience.
“Don would have wanted changes to be made as well,” said Brenton-Goguen. “He would have fought right beside Dave and Nan because he believed that, he was a veteran.
“He also believed that people should all be given the same rights, the same care, the same access to medical [care]. He would’ve fought right beside us. It’s definitely a cause we all believe in.”
