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Vancouver couple embarked on cancer drug fundraiser after coverage was rejected by BC Cancer

A Vancouver couple has a prescription from an oncologist in their plight to privately fund aHealth Canada-approved anti-cancer drug. He speaks frankly about being rejected even though he wanted to.

Manuel Perez Cabello has stage 4 desmoplastic small round cell sarcoma, a doctor who takes his Entrectinib, the most commonly used targeted drug in pediatric patients. has the approval of

However, as it costs $10,200 a month, Perez and his partner Samia his Perez applied for compensation under BC. Cancer Compassionate Access Program. Their application was denied without explanation, they told Global News on Tuesday.

"Of course you'll want to use all the tools available. It's a tool that you can use for anything, if you can," Manuel said as he sat next to Samia in the garden.

"It was very shocking that BC Cancer considered funding even a small percentage."

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Manuel 2019 Diagnosed with cancer in 2008, I have already been on 5 drugs and 2 lengthy invasive chemotherapy treatments for 10 months. he had surgery. His cancer has gone into remission twice, he said, but has only recurred.

In remission, when the couple thought the cancer was completely gone, their daughter, Amalia, was born, now 10 months old.

The couple chose entrectinib at the recommendation of their oncologist rather than undergoing chemotherapy again. The drug, also known as dermatitis, "provokes a durable and clinically meaningful response in patients" and was found to be safe in certain types of solid tumors. treatment options for patients.

"I'm going to try anything at this stage because I have to do it," Samia said.

"I think it's worth fighting for and worth proposing so I can watch my daughter grow up. It's just devastating."

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Costs they said they agreed to cover 60% of the monthly cost of Entrectinib, leaving a tab of about $4,000 each month. Samia is on maternity leave and Manuel has limited ability to work due to his health, which is an amount they cannot afford.

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Visit We can do it, but it's not at a cost that the average person can afford," says Samia. "We are not the only family or people going through this."

She said the cost of Manuel's further surgery and chemotherapy could exceed the cost of the remaining $4,000 of Entrectinib.

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said he could not comment. The company said it strives to be "flexible and compassionate" with patients seeking treatment "while balancing the need to ensure patient safety and efficacy with a sustainable healthcare system."

Entrectinib is under review by the Canadian Oncology Drug Review (pCODR), which will make recommendations later this year on whether provincial funding should be provided, he explained.

"BC Cancer will wait until final recommendations are made by pCODR and Canadian Medicines & Technologies in Health (CADTH) before making a final decision on state funding." , it writes.

"We are not getting ahead of this process."

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Meanwhile, Mr. and Mrs. Perez have already paid $8,000 for Perez to take the drug for two months. They say they have received tremendous support from the community and several families have reached out to them sharing that they are in a similar position trying to obtain compensation for themselves or their children.

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helps cover the use, or at least half of it," Samia said.

Manuel's prescription is for six months, she added, but the couple hopes to create wider awareness of how the system can better serve patients.

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An online fundraising campaign launched by Samia's cousin had raised more than $28,000 as of Tuesday, helping to cover the cost of the drug, other items the two are pursuing. treatment and living expenses.

Manuel says he feels "physically exhausted" and "scary" knowing his rare cancer survival rate is "not very high." Told. However, the couple hasn't given up hope.

"I'm worried that I've had all these treatments and they really didn't work," he explained. “At the same time, I am excited because there is a new drug that is a great tool and the options are out there.”

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