'I'm angry at the Ontario government': Ottawa couple pays $80,000 out of pocket for cancer treatment

An Ottawa couple say they have spent nearly $80,000 of their own money for cancer treatment, which they say the province covers for other people.

Linda Guttilla is a determined fighter, who is not giving up.

"I’m not ready to leave," Guttilla says.

Diagnosed with colon cancer in 2019, Guttilla endured nearly two and a half years of chemotherapy. When doctors said that stopped working, she was placed in palliative care.

"Wasn’t much hope for me."

But, Guttilla and her husband Michael Darch did find hope through a new immunotherapy treatment, which she says is working and keeping her alive.

“I have no side effects at all, I’m back to my hyper-self. I’m doing everything and then some, and I feel wonderful,” Guttilla tells CTV News Ottawa. “If I don’t get the treatment, I know what the outcome will be and I’m not ready to die.”

The drug, called Keytruda, comes at a cost. The couple says they pay around $10,000 a month, all out-of-pocket. What’s worse, they say, is the province does cover the cost for some patients - those who have had no previous treatment.

"So if I was diagnosed today with colon cancer, Stage 4 colon cancer, I would get it for free, and that’s why I’m angry. I’m angry at the Ontario government,” Guttilla says.

"There’s considerable discussion over healthcare and its funding in Canada," says Darch. "We keep hearing that decisions should be based on results for the funding. We have the results, we don’t have the funding."

The couple says they also approached the drug company on compassionate grounds, but that too was denied.

To date, the two have paid nearly $80,000 for Keytruda, money they say was saved for retirement.

"And you have to make the critical choice; do I want Linda in my life or do I want a big bank account?” Darch says.

"I like when they say, 'healthcare you pay with your health card’, well we’re paying with our credit card and it’s not fair and it’s not right," Guttilla says.

In a written statement, a spokesperson for the Ministry of Health says, “The New Drug Funding Program (NDFP), administered by Ontario Health (Cancer Care Ontario) on behalf of the Ministry of Health, funds injectable cancer drugs administered at outpatient cancer care sites, including Keytruda (pembrolizumab).

Keytruda is funded for several types of cancers including colon cancer, bladder cancer, melanoma, head and neck cancer, lung cancer and lymphoma.  Patients must meet specific eligibility criteria to be approved for funding.  The current eligibility criteria for pembrolizumab are posted on the Ontario Health (Cancer Care Ontario) website at: https://www.cancercareontario.ca/en/drugformulary/drugs/pembrolizumab.

Many hospitals in Ontario have drug access navigators who are familiar with the NDFP and other needs of cancer patients. They can work with the patient and their oncologist to determine if the patient is eligible for funding through the NDFP or any other sources.”

Guttilla’s oncologist has tried to get it covered, and says after months of writing appeals, the government contacted him this week to say the drug will be funded.

"It’s such a release. It’s emotionally, mentally - just so great that all of this has happened,” Darch tells CTV News Ottawa.

"Linda, of course, thanks her oncologist for all of the work he’s done in order to move this file forward; but, when she was on the phone with him last night, she was just overjoyed," he says.

It’s not known if any of the money already spent will be reimbursed. The decision going forward may also help others, says Darch.

"Linda has set a bit of a precedent, other people who have been in our situation, other families, have now this open."

In a statement to CTV News Ottawa Friday morning, Ontario Health said they could not comment on individual cases.

"Ontario has a rigorous process for evaluating new therapies that includes a robust assessment of a therapy’s benefit, safety, and value for money," the statement said.

"While many oral and injectable cancer treatments are funded through the Ontario Drug Benefit Program and the New Drug Funding Program, Ontario does not cover every drug. The needs of patients with cancer may also differ depending on individual circumstances. Detail about the Funding Process for High-Cost Cancer Drugs is available here.  In general, funding starts after the program approves the coverage. Hospitals are directly reimbursed by the program."