Cystic fibrosis patient clings to last hope for life-saving medication

by Leo Almazora18 Nov 2021

A 23-year-old woman living with a severe respiratory disease is in dire straits after her private insurance provider refused to pay for a high-priced treatment.

The woman, Sara Aldrich, was diagnosed with cystic fibrosis at an early age, but has nevertheless been able to pursue an active lifestyle for most of her life. That changed over the past three years, reported Global News, as her condition took a turn for the worse.

“[N]ow, walking up the stairs I usually cough, I usually end up throwing up,” Aldrich said, describing how the genetic condition’s effect on her lung function weighs on her quality of life.

To regain her previous standard of living, Aldrich said she needed to take a new treatment called Trikafta, which has been approved for use in Canada. Unfortunately, she said the drug isn’t covered under her private insurance.

“The price would need to be reduced by at least 80 to 90 percent for them to be able to pay for it,” she said. “[T]hey said that the price of the drug is currently outweighing the benefits of it.”

Kim Steele, director of government and community relations with Cystic Fibrosis Canada, called Trikafta “the single biggest transformation in the history of cystic fibrosis.”

In an interview with Global News, she said the drug treats 98% of members of the cystic fibrosis community, and helps them get off the lung transplant list as it slows the progression of the disease. But even though the drug has gotten the green light for therapeutic use – it was approved by Health Canada in late June – many patients around the country still aren’t covered for it.

Aldrich is hoping that she can get Trikafta coverage through an OHIP program aimed at young people. But the patchwork system of health coverage around the country, Steele said, also creates challenges for patients who turn to the public system.

While public plans have moved more quickly to cover the drug than private insurers have, she said not everyone is eligible to get covered under the public system. Some Canadian jurisdictions, she added, will require that patients with private insurance make claims with the insurer first.

“[I]f your private insurer is not covering it, it’s a whole bunch of work to try and get it through the public system,” Steele said.