They face financial ruin to get a new lung. Some are choosing to die instead

At 42 years old, Natalie Jarvis decided she was ready to die.

Late last year, her Halifax specialist informed her that her only chance to survive would be a double-lung transplant. It wasn’t the surgery that scared her. Or the lengthy recovery.

It was the cost.

She would need to come up with at least $10,000 in a matter of weeks.

“On January 3rd, I mentioned palliative care to the doctors,” she says. “I was ready to give up.”

Lung transplants are covered by the health-care system. But because they cannot be done in Atlantic Canada, patients in the region must move to Toronto for months on end in order to get the life-saving surgery. Some have lost their homes or liquidated their savings to afford the expense.

Some have even chosen death over financial ruin.

Jarvis has antisynthetase syndrome with interstitial lung disease, a rare auto-immune condition. For years, she’s relied on steroids to keep her going. But late last year, her condition deteriorated at an alarming rate.

She could no longer do household tasks. When she took off her oxygen mask to shower, her feet would turn purple. She would fall asleep at 6:30 every night.

She had to make the biggest decision of her life while struggling to breathe.

Lungs are the only organs that aren’t transplanted on the East Coast. Instead, most of the 26 or so Atlantic Canadians who receive them each year have their surgery at Toronto General Hospital, considered one of the top lung transplant sites in the world and one of four locations in Canada that do the operation.

Donated lungs can only live outside the body for several hours, which means transplant candidates must be nearby. But the cost of moving to Toronto for an average of six months until a match is found, and then remaining another three during the long post-transplant recovery, is only partly covered by the provinces.

As rent prices soar in Toronto, those who need to stay for medical reasons are forced to come up with more money.

Not only that, all transplant patients must travel with a support person, someone who can help with their care. That person typically has to quit their job or go on leave, cutting off a vital source of income during a traumatic time.

“If you have a mortgage, if you have car payments, anything that you do back home you still need to do when you’re in Toronto,” Jarvis says. “Those bills don’t go away.”

Jarvis has spent 18 years working at the Staples Call Centre in Lower Sackville, N.S.

“Ten grand may not sound like a lot to some people, but when you’re living paycheque to paycheque and you need at least $10,000 to get you started to live somewhere else, it’s a lot.”

There was talk of Jarvis’s mother taking out a line of credit. But Jarvis said no, fearing that if she died they could lose the rural property near Upper Kennetcook, N.S., the family has called home for more than 100 years.

While Jarvis desperately wanted a lung transplant, the stress of what it would do to her family financially was becoming too much. It’s then that she started thinking about palliative care.

“At the time I thought maybe it would just end things faster, it would end the stress.”

Jarvis isn’t the only patient to hesitate.

In Halifax, Dr. Meredith Chiasson looks after all the transplant candidates in Nova Scotia and Prince Edward Island. She’s in the process of adding New Brunswick patients to her list.

The respirologist runs the satellite transplant clinic at the QEII Health Sciences Centre, working in tandem with the Toronto team. Without a lung transplant, her patients will likely die within a year. If they get one, half will still be alive in a decade.

But she says she’s troubled by a conversation she repeatedly has with her patients. In the last two years, she says all of them have expressed concerns over the cost of going to Ontario.

Two patients this year, she says, have decided not to have a life-saving transplant. They cited finances as their main reason.

“Emotionally, at the worst time in their life, when they’re desperately sick and facing death, we’re asking them to leave their friends, their family, their support system, and to move halfway across the country,” the specialist says.

“It feels that sometimes my patients are punished because they need a lung versus another organ or bone marrow transplant. But we’re trying not to look at it that way. We’re trying not to let our patients look at it that way because we’re very fortunate that Toronto is there and willing to transplant our patients for us.”

While Chiasson treats her patients in hospital in Halifax, she’s also doing what she can to help them outside the clinic.

“To think a 40-year-old may choose death as opposed to asking people for money, it’s really hard to go home at the end of the day and feel good about that.”

Each province has its own allowances to help with the costs, ranging from $1,000 a month for patients from P.E.I. to $3,000 a month for those from Newfoundland and Labrador.

The lung associations in Nova Scotia and New Brunswick were worried their provincial allowances of $1,500 a month weren’t cutting it, so they created funds of their own to help out.

Even with the help, some transplant candidates have faced devastating financial consequences.

“I had a young family, they lost their home,” says Barbara Walls with the New Brunswick Lung Association. “If they’re older, if they’ve got any personal pensions, they pretty well go through everything that you’ve built a life towards.”

Nova Scotia’s Department of Health said it would make the minister available for comment Wednesday.

Unlike Natalie Jarvis, Monica Hamnes has the luxury of time to plan for her transplant. The Dartmouth, N.S., woman has been told she’s got about a year left in her lungs before she needs to leave.

“It’s scary. We sold our house, thinking that we have to go at any time,” says Hamnes, who suffers from idiopathic pulmonary fibrosis. “But thank God it was slowly and we didn’t have to go right away.”

Hamnes now lives in an apartment with her husband. She’s optimistic about what’s to come, even though her finances might take a big hit.

“I guess we’ll do what we do. If we have to give this place up and put our furniture in storage, we’ll have to do that.”

After Jarvis announced her decision to go to palliative care, she says it was her doctor who saved her life.

“She said, ‘Natalie. I believe that you can be a great lung transplant patient. You can get through this.’ That’s what made me think about it a little bit more. I’m tough.”

Jarvis started making calls to every possible accommodation in Toronto and was quoted rates as high as $5,000 a month. She found a former university residence, where she now shares a room with her mother.

There’s a kitchenette within arm’s reach of her bed. But she’s not complaining: it’s only $2,000 a month. In the end, her employer and friends chipped in, raising $7,000 to at least get her feet on the ground.

After her initial assessment, she’s been told she needs to lose more weight and have further testing before she’ll officially be placed on the transplant list, extending her stay in Toronto even longer.

But her attitude, she says, has completely changed.

“Am I scared? Of course, it’s a surgery. But do I believe that everything is going to turn out OK? Yes, I do, because I believe that I’m strong enough to get through it. I have enough people that are rooting for me.”