Funding for a life-saving drug has been denied by the British Columbia Health Authority as a couple struggle to fund their share

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A Vancouver man with stage four cancer has been denied coverage for a potentially life-saving drug despite the drug being approved by Health Canada and prescribed by his oncologist.

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“His oncologist was so excited when she told us about it,” said Samia Perez, wife of 43-year-old cancer patient Manuel Perez. “She told us that the drug has shown good results in pediatric patients, an 80 percent reduction in tumors and a 20 percent cure rate. No one had ever used the word “cure” among us before.”

It felt like a turning point for the couple, parents to a 10-month-old daughter.

Because the drug entrectinib costs $10,200 a month, her BC Cancer oncologist immediately applied for coverage under the agency’s Compassionate Access program.

Within a few weeks they got an answer: no. There was no explanation.

Pharmaceutical company Roche agreed to cover 60 percent of the cost, but the couple is struggling to find $4,000 a month to cover the rest.

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“We can’t afford that,” says Samia, 38, who is on maternity leave from her job as a marketing specialist. “If it’s legal and prescribed, why isn’t it covered?”

Perez, a web developer, was at the gym in 2018 when he felt a lump in his lower abdomen. Doctors at a local ambulance suspected it was a hernia and didn’t order an ultrasound. But Samias Her intuition told her something was wrong. Manuel went back, asked for an ultrasound and was told there was no immediate need.

On a trip to Spain to visit Perez’s family, the bump was still there. Samia decided to pay for an ultrasound. Although Samia’s Spanish was rudimentary, she could see the expressions on the doctor’s faces during the scan.

“I knew it was bad.”

Five days later, the couple were back in Canada and Perez was rushed for surgery.

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Perez had a 12 cm mass growing on the outside of his colon, a stage 3 desmoplastic soft-tissue small round cell sarcoma, an aggressive form of cancer rare in adults.

Perez did not fit the typical patient profile for the cancer, which has made treatment difficult.

The family embarked on a daunting odyssey of diagnoses, second opinions, and rising costs.

Perez underwent successful surgery and began chemotherapy in early 2019, but five months later the cancer returned, now in stage four. Perez had another abdominal surgery and underwent six rounds of post-operative chemotherapy. His scans came back clean.

“It meant everything to feel like we had a chance as a family to believe that this could all be behind us. Manuel threw away all his chemo clothes (smaller because of weight loss). It was a fresh start,” said Samia.

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Amalia, who has her father’s light brown eyes and big smile, was born in October 2021. But in May 2022, a scan showed the cancer had returned for the third time. Their surgical oncologist said they should think outside the box — entrectinib, a targeted drug that had shown positive results in tumors with the same gene expression as Manuel’s, could be the answer, but the cost to the young family is staggering.

BC Cancer told Postmedia that the province is awaiting a decision from the Canadian Agency for Drugs and Technology and Health (CADTH), a national body that makes spending recommendations for provincial and federal public drug plans and cancer agencies on whether and how to use the drug will be funded.

“We are not prejudging this process,” BC Cancer said in a statement. “A final decision is expected later this year.”

The couple now pays for the drug themselves. A cousin started GoFundMe.

Samia is arguing for change, not just for Perez but for other families waiting for approved, life-saving drugs.

“No family should have to go through that,” Samia said.

“It’s extremely frustrating to know that there are options and they aren’t available,” Perez said. “I want to see my daughter grow up. I want to live.”

CADTH had not responded to Postmedia inquiries prior to going to press.

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