A Vancouver couple is speaking up about their plight to privately fund a Health Canada-approved cancer medication that was denied to them, despite having a prescription from an oncologist.
Manuel Perez Cabello has stage four desmoplastic small round cell sarcoma and has a doctor’s approval to take Entrectinib, a targeted drug that is most commonly used in pediatric patients.
It costs $10,200 a month, however, so Perez and his partner Samia Perez applied for coverage under B.C. Cancer’s Compassionate Access Program. Their application was denied without an explanation, they told Global News on Tuesday.
“Of course you want to use all the tools that are available, mostly when they’re out-of-the-box tools and there is potential,” said Manuel, sitting next to Samia in their yard.
“It was quite shocking that BC Cancer would even consider funding not even a percentage.”
Manuel was diagnosed with cancer in 2019 and has already gone through 10 months of “heavy-duty” chemo with five different drugs, along with two lengthy and invasive surgeries. His cancer has gone into remission twice, only to return again, he said.
While in remission, when the couple thought the cancer was gone for good, they had their daughter Amalia, who is now 10 months old.
Rather than undergo chemo again, the couple opted for Entrectinib on the recommendation of their oncologist. A study published in the National Library of Medicine in 2020 found that the drug, also known as Rozlytrek, “induced durable and clinically meaningful responses in patients” in certain kinds of solid tumours and was a safe treatment option for patients.
“We are willing to do and try anything at this stage because we can’t afford not to,” said Samia.
“I feel like it’s worth fighting for and it’s worth the money to put forward, so he can watch our daughter grow up. It’s just devastating.”
The couple said their oncologist reached out to a pharmaceutical company called Roche, the drug provider, which agreed to cover 60 per cent of Entrectinib’s monthly cost, leaving them with a monthly tab of about $4,000. With Samia on maternity leave and Manuel’s ability to work limited by his health, however, it’s a payment they can’t afford.
“It’s available — like we’re able to have access to it — but it’s not cost available to the average person,” said Samia. “We’re not the only families and people going through this.”
She suggested the cost of more surgeries and chemotherapy for Manuel might exceed the remaining $4,000 cost of Entrectinib, raising questions about why BC Cancer wouldn’t cover it.
In a written statement, BC Cancer said it couldn’t comment on a patient’s specific case, even with their consent. It said it endeavours to “be flexible and compassionate” with patients seeking treatment “while balancing the need to ensure patient safety and efficacy and a sustainable health care system.”
Entrectinib, it explained, is still under review by the pan-Canadian Oncology Drug Review (pCODR), which is expected make a recommendation later this year on whether provinces should fund it.
“BC Cancer waits until a final recommendation is made by pCODR and the Canadian Agency for Drugs & Technologies in Health (CADTH) before making a final decision on provincial funding,” it wrote.
“We do not pre-empt this process.”
Meanwhile, the Perez couple has already shelled out $8,000 for Perez to take the drug for two months. They said they’ve received tremendous community support, and several families have reached out to them to share that they’re in a similar position trying to obtain coverage for themselves or their children.
Manuel’s prescription is for six months, she added, but the couple aims to create broader awareness on how the system can better serve its patients.
An online fundraising campaign set up by Samia’s cousin had raised more than $28,000 as of Tuesday to support the cost of the drug, other treatments the pair is pursuing, and their living expenses.
Manuel said he’s feeling “physically tired” and “scared,” knowing the survival rate of his rare cancer is “not super great.” The couple, however, is not giving up hope.
“Having gone through all those treatments and really not having worked makes me concerned,” he explained. “At the same time, I’m excited because there’s a new drug, which is awesome that tool, that option is out there.”