The BC Cancer Agency is taking major steps to adapt to a new era of cancer treatment where private screening companies are giving patients information that isn’t always translating to treatment options.

Vancouver-based Contextual Genomics is one of those companies. This spring, it offered free genomics testing to the first 1,500 cancer patients who sent tumor samples to their UBC laboratory. A March press release described it as a new step in personalized medicine, where “based on the presence of a specific mutation in a cancer, healthcare providers can select the most appropriate treatment for the patient."

Chilliwack’s Lorraine Moysir is one of the people who submitted a sample on the advice of her oncologist, Dr. Paul Klimo. Moysir had been unwell for months before she finally got a devastating explanation for her back pain and fatigue last year: stage 4 cervical cancer that was already spreading to her lymph nodes.

“It blind-sided me, totally was not on the radar,” said Moysir.

The fitness instructor had just turned 32 years old. Chemotherapy and radiation hadn’t worked and the cancer was spreading. She recently got the results from the Contextual Genomics test, showing a link between her disease and kidney cancer. She says Dr. Klimo prescribed Afinitor, a drug the BC Cancer Agency fully covers for kidney cancer, but not for cervical cancer.

"It's infuriating. It's maddening,” said Moysir. “Being 33, a single mom, you're telling me there's no option -- but you're also telling me there's a potential option. I don't understand how that works."

Using a drug for a treatment other than its approved use is called an off-label prescription. At approximately $10,000 a month for Afinitor, the BC Cancer Agency says it simply can’t justify that kind of expense on a “what if” basis.

“The challenge for a publicly funded system is it's very difficult to justify using very expensive treatments where there is no evidence that they're going to be of benefit,” said Dr. Malcolm Moore, the organization's president and CEO.

“This comes up not infrequently now that these broader genetic tests are becoming available and it's something we're actively talking about.”

The BCCA is in negotiations with drug companies, as are many public health agencies across Canada, to explore off-label uses for medications for a kind of accelerated clinical trial in cooperation with the manufacturer. One model they’re considering is the pharmaceutical companies providing the drugs free of charge for the first two to three months of treatment, while the agency gathers the information on how successful the medication is. If it works, the public health care system would then pick up the costs after the three months, even if they’re considerable.

"What we're trying to do it target these expensive drugs only to the patients we know will benefit from them,” adds Moore.

He also tells CTV News the BC Cancer Agency is now using an Oncopanel on all patients coming through for treatment. Earlier this week the Oncopanel, which was initially a pilot project, started testing for 40 different genomes in cancer cells to better personalize treatment. It’s far less comprehensive than the much-publicized Personalized OncoGenomics (POG) research project scanning all 30,000 human genomes, but considerably more than the 90 most common mutations searched out by Contextual Genomics. The Oncopanel will have more “actionable genomes” added to it as the POG database expands, with private data supplementing those findings.

"It's a great opportunity for us and what we have to do is figure out a way to do this in an efficient way, learn from it and kind of build on our current ability to find the best treatment for the patient,” said Moore.

B.C. is the first province to implement Oncopanel genomic screening for cancer patients, but it won’t be the last, and the list of treatable mutations will continue to grow and become more robust as each patient’s information is added to the database. Agencies across Canada are also working together to discuss the accelerated clinical trials of off-label treatments with pharmaceutical companies.

These initiatives and developments will be welcome news for the many patients now stuck in limbo, offered detailed genomic information with treatment options that aren’t approved or affordable.

Moysir’s friends have established a Gofundme page to help with living expenses as side effects from chemo and radiation treatments have left her unable to work. She’d initially hoped they’d be able to raise enough to try Afinitor as well, but she calls the price tag unattainable.

“It makes me sad, and it makes me very frustrated.”