Woman who relies on $300K drug fears financial impact of changes to N.W.T. health benefits

For the past year, Katie Hart has been on a "miracle drug" for her cystic fibrosis called Trikafta.

But that miracle is expensive — $300,000 a year.

Hart was diagnosed with CF when she was born. Growing up in Yellowknife, she had to travel to Edmonton for specialized care every three to four months.

At age 10, she was also diagnosed with Type 1 diabetes. Those drugs, she says, cost about another $24,000 a year.

Her medication and travel for treatment was covered through a combination of her parents' private insurance and the N.W.T.'s extended health benefits program.

"Growing up, [the program] basically allowed us to not have a big financial burden with those diseases," said Hart. "So to not feel as if I couldn't also join in sports and do things I love because we were weighed down by any finances, because the government was so good with that old policy being able to refund things."

Hart's treatments have been so effective that she's become a successful athlete, has represented the N.W.T. at the Canada Games and set a record for javelin throwing.

In November 2021, the territory announced it would start covering Trikafta through the extended health benefits program. But it recently announced changes are coming and Hart is concerned she may have to pay a lot more to stay healthy.

That's because the government is going to introduce an income assessment under the new policy. Essentially, residents that make more than a certain threshold will enter into a copay agreement with the territory for their drugs and other medical equipment. Those that fall below that threshold will have those costs covered entirely, including for dental and vision, which are new additions to the program.

Jeremy Bird, a spokesperson for the Department of Health and Social Services, said Trikafta will continue to be covered under the new policy. He added the income assessment "may impact copayments, deductibles and family maximums, depending on the individual or family's net income."

It's not yet clear what the threshold will be, but officials have said it will follow the Northern Market Basket Measure. They've also previously told CBC the most anyone would pay under the new policy is about four per cent of their net income.

The territory has released a calculator for residents to get an idea how much it may cost them and a Q&A on the changes.

Hart is in her final year of a bachelor's degree in psychology at the University of Alberta in Edmonton. She said she's already preoccupied with finding housing and having a budding career.

"Now this medicine would be added onto that and just add a lot more stress into my life," she said.

"I need to be taking this medicine to stay healthy, which is already kind of stressful as it is … No one asks to be born with these diseases."

All of this has led to Hart reconsidering whether she wants to return to the North if she doesn't get the same benefits.

Bird also said the portion of medical travel that is covered by extended health benefits will not be affected by the changes.

Previous program a 'sigh of relief' 

Pills, injections, glucose meters, relying on coaches and friends to check in with her: "It just builds up so much," said Hart's father, Rob, of raising a child with significant diseases.

Under the changes, the territory is also doing away with the specified disease conditions list. Any resident that had a disease on that list was automatically eligible for drug and medical supply, as well as equipment coverage.

Having cystic fibrosis on that list was "a sigh of relief for our family," said Rob. "Even though our daughter could be sick and we could be in the hospital any moment … and like all this medical stuff is flying around your head, it just allowed you to feel normal in a way."

The government has said removing the list will make the program more equitable and allow residents that were previously denied coverage — because they didn't have a condition on the list — to now access it.

Northerners had a chance to voice their opinions on the changes through the territory's engagement process last year.

That engagement resulted in 51 per cent of respondents saying they were against the changes, while 40 per cent were in favour and nine per cent were neutral.

Hart said she and her family filled out the online survey as part of that process, explaining her situation.

"But I don't really feel like that survey was heard," she said.

Rob said he later met with health officials, including former Health Minister Julie Green. He said officials explained they wanted to expand the program so more people could access it.

"My answer was yes, of course to help these people," he said. "But it doesn't mean you need to kill the specified diseases list. There's a reason there's a list of diseases that are so damaging physically, emotionally, psychologically, right? It consumes your whole life."

With an election on the horizon, Rob said he is still holding out hope that a new government could reverse the changes.