Laura Proctor
Photojournalist

The fight for Trikafta - 2025

It’s a Saturday, and Vicky Maldonado and her husband Richard are giving their 6-year-old son Sebastian his first-ever dose of Trikafta. After that, they go through his regular morning treatments. But that dose of medication was years in the making.

Sebastian has cystic fibrosis, a rare disease that affects less than 5,000 Canadians. In 2021, Health Canada finally approved the “miracle drug” Trikafta, which eases CF symptoms drastically —reducing lung infections by up to 60%— and slows progression of the disease.

Sebastian’s specific mutations actually make him part of the “Ultra Rare” population within the CF community. He has not been eligible for Trikafta, as Health Canada’s approval does not include all mutations. But over the holidays, after endless days and nights of his parents fighting for his ‘right to try,’ Sebastian became the first member of this ultra-rare group in Ontario to be given the chance to start Trikafta.

And then, the payment issues. Trikafta is expensive, and Vicky’s private insurance as well as her husband’s have denied coverage. They are currently accessing the drug through the province’s Trillium Drug Program, which adds the expense of an annual deductible to their budget. This is during an affordability crisis with a mortgage and 3 kids, as well as Sebastian’s other healthcare expenses.

The province’s OHIP+ program has no deductible, but their family isn’t eligible for OHIP+ because they have private insurance. They would have to give up their insurance and routinely pay for the dental work of two adults and three children out of pocket.

One province that’s handling this differently is Nova Scotia, who waive the deductible entirely.

Parents of children with rare diseases have told me that they didn’t seek out the role of an advocate. They already have careers and a kid with a disability to look after. They’re exhausted and burnt out, but they’ve had to learn how to navigate bureaucracy and red tape to fight for their kids’ health. They’ve had to fight for access to life-changing and life-saving medications, and for that access to be affordable for everyone.