In the weeks leading up to her daughter's second double lung transplant, Lisa Ali of Cole Harbor, New Jersey, said she was scared of answering the phone.
For more than a year, she and her 20-year-old daughter, Talia Ali, lived in Toronto awaiting a life-saving surgery that was not available in Nova Scotia.
That wait is a self-paid fee for Nova Scotians. If a patient is on the transplant list, they will need to move to Toronto, wait for a match and recover for several months after surgery.
“I live with a credit card and there was no way to pay it,” Lisa Ali said in an interview. “I'm waiting for a lung call, but the only one calling me is the creditor.”
Alice is one of three Nova Scotia families who spoke to CBC News about the economic destruction she faced while waiting for her loved one to access a lung transplant operation in another state in recent months.
Ali's family said the lack of financial support from the federal and state governments put a major strain on them during an already difficult time. A month after her recent transplant, Talia Ali is maintaining her intensive care unit. One of the lungs was not taken and had to be removed.
“She has many complications from this operation that we didn't expect,” said her grandmother, Judy Robichou.
“We had expected her to leave the ICU by this time…but even the doctors don't know what to expect. They're taking it at once.”
First transplant of 2020
Talia Ali was diagnosed with pulmonary hypertension at the age of seven. At the time, the family was told that the condition was fatal and that the only treatment was lung transplant.
She received her first transplant in 2020 when she was 16 years old. Her family recovered in Nova Scotia when they developed a new problem and learned that another port would be needed.
“Talia, she's fighting now,” Robichaud said. “We have to go far because she is.”
Adding to tension is a matter of money. Lisa Ali said most people are unaware that they have full-time caregivers on the lung transplant list.
The person is unable to work as it is his job to take the patient to the hospital for multiple appointments a week and ensure that the patient is taking all the medications.
When Ali left her job to go to Toronto, she thought she would qualify for employment insurance nursing care benefits, but was shocked to learn that she had less than 10 hours later.
An Employment and Social Development Canada statement said she was able to appeal the decision, but that it must be done within a 30-day window.
Ali said she was overwhelmed as she moved from the rental home and found a place to live in Toronto and reach her daughter's first appointment.
“I said, 'I don't have the energy to sue that,'” she told CBC News.
Nova Scotia offers a $3,000 monthly allowance to families who have to live out of state for long periods of time for health care, only covering family rent in Toronto. Ali estimates he won $20,000 in debt covering additional costs.
Now that her granddaughter is facing serious complications, Robichau expects it to be another year before they return home.
She said people were gathering behind them and helping them achieve their goals by offering what they can. On Saturday, Colleen's pub in Dartmouth held an event for the family, bringing in over $5,000.
“If our family and our friends weren't hanging out with us and helping us support what's going on right now, I don't know how they could manage there. I'm incredibly grateful to them,” Robichou said.
Robichaud and Lisa Ali say that both the state and federal governments need to do more to help families like them, and they will work with other Nova Scotia families who are defending change.
Health Minister Michelle Thompson told CBC News last month he sympathizes with families in similar situations, but told CBC News that the health system is growing in many directions and that the department must make tough choices.
She said Nova Scotia is unique compared to other states. This is because it covers some of the travel expenses of supporters who have to go with their patients.
“We will continue to review the program and hear from people. We want to respond,” Thompson said at the time. “But it's not a cost recovery program, it's just a desire to maintain the integrity of the entire system. I know it's difficult.”
