In the weeks leading up to her daughter’s second double lung transplant, Lisa Ali of Cole Harbour, N.S., said she was scared to answer the phone, unsure of who would be on the other end.
For more than a year, she and her 20-year-old daughter, Tahlia Ali, had been living in Toronto waiting for the life-saving surgery that is not available in Nova Scotia.
That wait comes at an out-of-pocket cost for Nova Scotians — once a patient is put on the transplant list, they must move to Toronto, wait for their match, and stay for months post-surgery to recover.
“I was living off my credit card and I had no way to pay it,” said Lisa Ali in an interview. “I’m waiting for phone calls for lungs, but the only people that are calling me is creditors.”
The Alis are one of three Nova Scotia families who have spoken to CBC News in recent months about the financial devastation they have faced while waiting for their loved one to access lung transplant surgery in a different province.
The Ali family said a lack of financial support from federal and provincial governments has created an immense strain during an already fraught time. One month after her most recent transplant, Tahlia Ali remains in intensive care. One of the lungs didn’t take and had to be removed.
“She has a lot of complications from this surgery this time around that we were not expecting,” said her grandmother, Judy Robichaud.
“We were expecting by this time she’d be out of ICU … But even the doctors don’t know what to expect. They’re taking it one day at a time.”
1st transplant in 2020
Tahlia Ali was diagnosed with pulmonary hypertension when she was seven. At the time, the family was told the condition was fatal and the only treatment was a lung transplant.
She had her first transplant in 2020, when she was 16. Her family was just getting back on their feet in Nova Scotia when she developed new issues, and learned she needed another transplant.
“Tahlia, right now, she’s fighting,” said Robichaud. “We have to go the distance because she is.”
Adding to the strain is the issue of money. Lisa Ali said most people don’t realize that a condition of being on the lung transplant list is to have a full-time caregiver.
That person cannot work, as it’s their job to get the patient to the hospital for multiple appointments a week, and make sure the patient gets all of their medications.
Ali thought she would qualify for employment insurance caregiving benefits when she left her job to go to Toronto, but she was shocked to learn she was less than 10 hours short of qualifying.
A statement from Employment and Social Development Canada said she could have appealed that decision, but needed to do so within a 30-day window.
Ali said she was overwhelmed, as she had just days to move out of her rental home, find a place to live in Toronto and get to her daughter’s first appointment.
“I was like, ‘I don’t have the energy to appeal that,'” she told CBC News.
While Nova Scotia offers an allowance of $3,000 a month to families who have to live out of province long term for medical treatment, that only covers the family’s rent in Toronto. Ali estimates she’s racked up $20,000 in debt covering additional expenses.
Now that her granddaughter is facing serious complications, Robichaud expects it will be another year before they get home.
She said people have been rallying behind them, offering what they can to help make ends meet. On Saturday, Colleen’s Pub in Dartmouth held an event for the family, bringing in more than $5,000.
“I don’t know how they would be able to manage up there if it wasn’t for our family and our friends hanging in there with us and helping to support what’s happening right now. I’m just unbelievably grateful for them,” Robichaud said.
Robichaud and Lisa Ali said both the provincial and federal governments need to do more to help families like theirs, and they plan to work with other Nova Scotia families who are advocating for change.
Health Minister Michelle Thompson told CBC News last month that she sympathizes with families who are in similar situations, but said the health-care system is stretched in many directions and the department has to make tough choices.
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’ll continue to review that program, to hear from people. We want to be responsive,” Thompson said at the time. “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.”