A Saskatoon couple says they've fallen through the cracks of Canada's health care system in their fight for a potentially life-saving cancer drug that the provincial government has refused to fund.

Stephen and Alyssa Noonan have spent countless hours speaking with officials from Health Canada, Saskatchewan's health ministry and with representatives with cancer-drug maker Roche in their quest to have a costly breast cancer drug, recommended to Alyssa by two oncologists, covered by the public health care system or their health benefits provider.

While all three bodies have deflected responsibility over the drug's $15,400 price tag, the Noonans are left struggling to understand how a potentially life-saving drug remains off limits for breast cancer patients.

"When you're diagnosed with cancer, they tell you to avoid stress," Alyssa Noonan told CTVNews.ca in a recent phone interview. "We're only 27. We don't have a whole lot of capital built up or savings built up. To be stuck with this cost is very daunting and stressful at a time when I'm trying to avoid stress."

She was diagnosed in March with an aggressive form of stage 2 breast cancer. With financial help from her family, she travelled to Rochester, Minn. where she sought a second opinion from an oncologist at the Mayo Clinic at a cost of $6,000.

The doctor recommended cancer drug Perjeta, which was also later recommended by her oncologist in Saskatoon. The use of the drug alongside standard cancer treatment has been shown to increase the chances of the cancer disappearing by 18 per cent.

In the U.S., Perjeta is used for women with a form of early-stage breast cancer who face a high risk of having the cancer spread to other parts of their body. In September 2013, Perjeta became the first breast cancer drug approved by the Food and Drug Administration to treat breast cancer before surgery. 

While Perjeta is covered in Saskatoon in the treatment of late-stage breast cancer, it's not covered for stage 2 breast cancer patients. The province has told Alyssa Noonan that including Perjeta in her cancer treatment regimen is not a standard of care in Canada. 

Couple urges Ottawa, province to 'step up and intervene'

When the Noonans contacted the Roche Patient Assistant Program, they were first told the drug had been approved by their benefits provider, only to learn weeks later that an error had been made and the drug was not in fact covered.

"I thought 'How can they make such a significant error?'" Stephen Noonan said. "We're talking about $16,000 and potentially a life-threatening decision that we're now being tasked with making in a significantly shorter amount of time."

Stephen Noonan wonders why the mistake hadn't been noticed sooner, which would have given the couple more time to lobby for coverage ahead of Alyssa Noonan's treatement.  

In the weeks that followed, Stephen Noonan reached out to his MLA, MP and even appealed to federal Health Minister Rona Ambrose in his quest to have the treatment covered.

In a letter to Ambrose obtained by CTVNews.ca, Stephen Noonan wrote: "We believe we've fallen through the cracks of the provincial and federal health care models and being left to foot the bill for this $16,000 drug is both unjustified and immoral."

While Roche agreed to lower the cost of the Perjeta for the Noonans by 20 per cent, Stephen Noonan told Ambrose that it's the Canadian health care system's responsibility to "step up and intervene in providing this life-saving drug."  

Health Canada told the couple they could access Perjeta as an "off label drug,”  given the current lack of approval by the national health agency for Alyssa Noonan's specific type of cancer.

Off-label prescriptions are when drugs are dispensed for uses other than what the medication has received approval for. The practice is perfectly legal in Canada. 

A spokesperson for Saskatoon MP Maurice Vellacott said in an email to Stephen Noonan that even if the drug is prescribed for an off-label use, the province could still choose to cover the cost.

The provincial Saskatchewan Cancer Agency’s spokesperson Gladys Wasylenchuk said in an email to CTVNews.ca that Perjeta in combination with chemotherapy is not a standard of care in Canada for Alyssa Noonan's specific type of breast cancer, "as there is insufficient evidence at this point for this indication, and as such, is not funded by Saskatchewan."

She said a review of the cost-effectiveness of the drug against the existing standard of care has not been completed because Roche has not applied for a review.

Roche, meanwhile, has not indicated whether or not it intends to have Perjeta reviewed for approval in Canada for the treatment of stage 2 breast cancer.

The Noonans have since used credit cards to make the initial $6,100 payment to cover the first of four Perjeta treatments.

"We're taking a loan out against our house to pay for this," Stephen Noonan said. "I don't know if there's anywhere else we can really go."

The couple has also launched an online fundraising campaign to help pay for the treatment, which has raised more than $10,000.

Alyssa Noonan, meanwhile, said it's "ridiculous" that breast cancer patients can’t access a drug that could improve their chances of beating the disease.

"How many lives are being impacted by lack of access to this drug?" she asked.